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DTSTART;TZID=Europe/London:20210421T110000
DTEND;TZID=Europe/London:20210421T123000
DTSTAMP:20260425T121218
CREATED:20210416T095021Z
LAST-MODIFIED:20210416T095359Z
UID:7836-1619002800-1619008200@www.m4rd.org
SUMMARY:Ensuring inclusive communications around genetics
DESCRIPTION:Genetics is complex\, and talk of genetics\, and even science\, can turn many people off from engaging with clinicians or self-management of their conditions.\nFindacure is teaming up with charity Breaking Down Barriers to deliver an informative webinar on understanding genetics in the rare disease field. \n  \nThis webinar will:  \n\nHighlight the role of genetics as both a tool to access diagnoses and understanding of rare conditions\, and a barrier to understand and discuss these diseases and their inheritance. \nHighlight case studies of what others in the rare community are doing to support with genetic diagnoses \nSignpost to pre-existing resources that your patient organisation can access
URL:https://www.m4rd.org/event/ensuring-inclusive-communications-around-genetics/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Genetics-banner-image3.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210510T130000
DTEND;TZID=Europe/London:20210510T140000
DTSTAMP:20260425T121218
CREATED:20210416T092914Z
LAST-MODIFIED:20210416T093459Z
UID:7821-1620651600-1620655200@www.m4rd.org
SUMMARY:RCPH-BPSU series: Bechet's Syndrome in children and young people
DESCRIPTION:Behçet’s syndrome is a rare multi-system inflammatory condition characterised by recurrent oral ulceration\, genital ulceration\, eye and skin involvement.  In this webinar\, the panel of speakers will present the findings of the 2017 BPSU study.\n  \nSpeakers:\n\nDr Clare Pain\, Consultant Paediatric Rheumatologist\, Alder Hey Children’s NHS Foundation Trust\, Lead of Paediatric Behcet’s service at Alder Hey and chief investigator on BPSU Behcet’s study\nDr Daniel Finn – StR in Oral Medicine\, Liverpool University Dental Hospital\nProfessor Robert Moots\nProfessor Paul Brogan\n\nLearning outcomes:\n\nUnderstanding how UK children are affected by Behçet’s syndrome\nImprove knowledge of differential diagnoses and investigations of Behçet’s like presentations including recurrent oral ulceration\nManagement of Behçet’s syndrome in children and young people\nThe role of genetic testing and monogenic mimics\nHow to manage recurrent oral ulceration
URL:https://www.m4rd.org/event/rcph-bpsu-series-bechets-syndrome-in-children-and-young-people/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-3.png
ORGANIZER;CN="RCPCH-BPSU":MAILTO:events@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210513T170000
DTEND;TZID=Europe/London:20210513T180000
DTSTAMP:20260425T121218
CREATED:20210505T085830Z
LAST-MODIFIED:20210505T090258Z
UID:7882-1620925200-1620928800@www.m4rd.org
SUMMARY:Mobilising pathways to accommodate new transformative treatments - using CF as a case study
DESCRIPTION:Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series.\nLearn from the experiences of patients\, parents\, and physicians about how cystic fibrosis pathways are rapidly adapted and what learnings can be applied to other rare diseases to strive for positive outcomes for all. \nHopefully many more rare diseases will soon have disease modifying treatments that have the potential to transform patient lives. However if diagnostic\, treatment and management pathways are not ready or fit for purpose then patient access will be delayed. This panel will discuss recent experiences in Cystic Fibrosis during a time when disease modifying agents were introduced. The panel will discuss this revolution in the treatment of this disease through the eyes of patients\, parents and physicians to explore what can be applied to accelerate pathway development in other rare diseases. \nPanelists: \nTracey Daniels – Clinical Lead\, York Teaching Hospital Foundation Trust \nElla Balasa – Patient Advocate and Health Engagement Consultant \nEleanor Thistleton – Parent and Medical Communications Expert\, OPEN Health \nTom Smith – Patient Advocate and Life Science Public Engagement Expert \nPanel Chair – Gavin Jones\, Global Advisor\, Rare Diseases\, OPEN Health
URL:https://www.m4rd.org/event/mobilising-pathways-to-accommodate-new-transformative-treatments-using-cf-as-a-case-study/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/05/68e77ee46c0acec5bd565a4b7a69741c.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210610T150000
DTEND;TZID=Europe/London:20210610T210000
DTSTAMP:20260425T121218
CREATED:20210507T100350Z
LAST-MODIFIED:20210507T100350Z
UID:7916-1623337200-1623358800@www.m4rd.org
SUMMARY:Precision Medicine & Rare Disease
DESCRIPTION:If you work in rare diseases or rare disorders\, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia\, biotech\, pharmaceuticals\, diagnostics\, clinical research\, informatics\, healthcare and regulatory bodies at the world’s most informative virtual conference.\nPatients living with rare diseases are often persistently misdiagnosed or undiagnosed\, potentially resulting in no treatment at all or treatments that are ineffective or unsafe.  Due to the lack of definitive diagnostics or efficacious and safe therapies\, foundations and research centers have been raising funds for re-purposing existing therapeutics or developing new drugs (typically classified with an orphan drug status).  As the development of biomarkers and genetic signatures continues to progress\, techniques and technologies are anticipated to become more precise and comprehensive\, thereby reducing the time to rare disease diagnoses. \nThis conference will cover the following topics and more: \n\nExperiences from all parties – patient journeys\, doctors’ consultations\, payer perspectives\nRecruiting rare disease patients for clinical trials\nTools that allow online access for patients\, doctors\, data sets\, multi-participant meetings\nChallenges of treating rare disease patients and families during a pandemic\nHow large\, medium\, and small companies in pharma\, clinical\, and diagnostic groups are addressing rare disease challenges\, including translational medicine\, data analysis\, economic modeling\, real-world data capture
URL:https://www.m4rd.org/event/precision-medicine-rare-disease/
LOCATION:ONLINE
CATEGORIES:Drug repurposing,Public health,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/05/Screenshot-2021-05-07-at-10.54.12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210615
DTEND;VALUE=DATE:20210617
DTSTAMP:20260425T121218
CREATED:20210416T095306Z
LAST-MODIFIED:20210416T095306Z
UID:7839-1623715200-1623887999@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2021
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is back for an eighth year\, and this time\, it’s gone virtual!\nNaturally\, this year’s conference will be a little different. COVID-19 has forced us online\, but in grabbing the word’s attention\, it has also become the poster boy for the power of drug repurposing. In a matter of months\, scientists successfully repurposed dexamethasone to treat COVID-19\, so why can’t the same urgency be applied to rare diseases?
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2021/
LOCATION:ONLINE
CATEGORIES:Conference,Drug repurposing,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Findacure-DrugRepo2020-254-768x512-1.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210621
DTEND;VALUE=DATE:20210726
DTSTAMP:20260425T121218
CREATED:20210225T100440Z
LAST-MODIFIED:20210225T100440Z
UID:7726-1624233600-1627257599@www.m4rd.org
SUMMARY:EURORDIS Summer School
DESCRIPTION:EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015\, researchers are also welcome to attend the Summer School.\nThe EURORDIS Summer School training covers topics including: clinical trials methodology\, clinical research\, ethics in medicines development\, regulatory affairs\, health technology assessment and marketing authorisation. \nThe 2021 edition of the EURORDIS Summer School will take place on 21-25 June 2020\, exceptionally online\, due to the COVID-19 pandemic. \nAhead of the online training week\, participants take part in 3 pre-training webinars and complete a selection of the online modules listed below. \nTake part in free online training
URL:https://www.m4rd.org/event/eurordis-summer-school/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/02/summerschool.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260425T121218
CREATED:20210608T084319Z
LAST-MODIFIED:20210608T084319Z
UID:8175-1625045400-1625067000@www.m4rd.org
SUMMARY:Diverse Discoveries and Inclusive Insights Conference
DESCRIPTION:Come together with like minded professionals who have a passion to ensure no one is left behind. \n\nHear from organisations who are leading the way in engaging with our diverse and multi-cultural society\, the importance of the language used\, developments in genetics and how health inequalities can have a devastating impact on the lives of families affected by genetic conditions. \n\nBreaking Down Barriers know that it is often the fear of offending that stops people from doing anything. This event is a safe space for people to learn from others and explore new innovative approaches to ensure your organisation is inclusive and diverse to meet the needs of the community you serve.\n\n\n\n\nTop Topics:\n\nHealth inequalities the challenges and solutions\nThe impact of doing nothing\nDevelopments in Genetics and pre-implantation diagnosis\nThe power of language\n\nYou can register for this innovative event by following the link below: \nhttps://attendee.gotowebinar.com/register/7018232613206242062
URL:https://www.m4rd.org/event/diverse-discoveries-and-inclusive-insights-conference/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Networking,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/06/Untitled-design-14.png
ORGANIZER;CN="Breaking Down Barriers":MAILTO:kerry.leeson@alstrom.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210726T173000
DTEND;TZID=Europe/London:20210726T183000
DTSTAMP:20260425T121218
CREATED:20210705T131344Z
LAST-MODIFIED:20210705T131344Z
UID:8241-1627320600-1627324200@www.m4rd.org
SUMMARY:The genetics of primary care
DESCRIPTION:The eleventh webinar in The genetics of… series from the Royal Society of Medicine. This webinar will equip attendees with the clinical skills required to help patients presenting with common genetic situations. \nFrequent challenges for primary care workers include identifying higher cancer risks in patients\, spotting a child with a rare disease and understanding consumer genetic test reports. This hour-long webinar will provide you with the clinical know-how you need to tackle these frequent scenarios\, with the opportunity to ask questions of the panel. \nDuring this webinar you will: \n\nProvide delegates with clinical and digital tools needed to assess a patients risk of developing certain cancers based on their family history\nRecognise the pattern of presentation to primary care that could indicate a patient has a rare disease\nEquip attendees with the steps to follow when presented with results of patient-organised DNA genetic tests\n\nThe genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine\, this series of talks will focus on the role of genetics in different areas of health and well-being.
URL:https://www.m4rd.org/event/the-genetics-of-primary-care/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/Screenshot-2021-07-05-at-14.11.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210806T133000
DTEND;TZID=Europe/London:20210806T153000
DTSTAMP:20260425T121218
CREATED:20210720T085833Z
LAST-MODIFIED:20210720T085833Z
UID:8289-1628256600-1628263800@www.m4rd.org
SUMMARY:Afternoon Tea with the Childhood Tumour Trust
DESCRIPTION:Want to learn more about Neurofibromatosis Type 1\, with a focus on diagnosis and care? \nCome along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with the Childhood Tumour Trust.  With Greg Smith MP and guest speakers. \nRSVP to vanessa@childhoodtumourtrust.org.uk
URL:https://www.m4rd.org/event/afternoon-tea-with-the-childhood-tumour-trust/
LOCATION:Danesfield House\, Henley Road\, Marlow\, Buckinghamshire\, SL7 2EY\, United Kingdom
CATEGORIES:Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/07/CTT-Danesfield-House-Invite-1-1-1.jpg
ORGANIZER;CN="Childhood Tumour Trust":MAILTO:info@childhoodtumourtrust.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210918
DTEND;VALUE=DATE:20210919
DTSTAMP:20260425T121218
CREATED:20210907T134250Z
LAST-MODIFIED:20210907T134250Z
UID:8375-1631923200-1632009599@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-1/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/NEW-WS-UK-Logo-Hi-Res-ISC.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210923T120000
DTEND;TZID=Europe/London:20210923T130000
DTSTAMP:20260425T121218
CREATED:20210819T091343Z
LAST-MODIFIED:20210819T091438Z
UID:8336-1632398400-1632402000@www.m4rd.org
SUMMARY:Findings from the NCARDRS rare disease collection discovery phase
DESCRIPTION:This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS\n\n\n\n\n\nAs part of the National Disease Registration service (NDRS) webinar series\, this webinar will cover: \n\n\n\nNCARDRS supporting specialised services\nThe impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England\nUnderstanding histiocytic disease – describing the largest population based cohort\n\nSpeakers: \nDr Mark Bishton\, Consultant Haematologist\, Nottingham University Hospitals NHS Trust\, Honorary Clinical Associate Professor\, University of Nottingham\, School of Medicine \nDr Peter Stilwell\, Higher Rare Disease and Cancer Analyst\, NDRS \nDr Hanhua Liu\, Senior Cancer Intelligence Analyst\, NDRS  \n  \nAlthough open to the public\, this webinar may be more useful for those working in healthcare\, commissioning\, public health\, policy or for a rare disease charity or patient group. \nThe webinar will be hosted on MS Teams and it will be recorded and uploaded to the NDRS website shortly after. There will be time for Q&A at the end of the talk. \nIf you have any questions about this webinar or registering to attend\, please contact NDRSengagement@phe.gov.uk.
URL:https://www.m4rd.org/event/findings-from-the-ncardrs-rare-disease-collection-discovery-phase/
LOCATION:ONLINE
CATEGORIES:Public health,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/08/rare-disease-2888820_1280.png
ORGANIZER;CN="National Disease Registration Service (NDRS)":MAILTO:NDRengagement@phe.gov.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210925
DTEND;VALUE=DATE:20210926
DTSTAMP:20260425T121218
CREATED:20210907T134709Z
LAST-MODIFIED:20210907T134709Z
UID:8378-1632528000-1632614399@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-2/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/DSCN1409-scaled.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211007T080000
DTEND;TZID=Europe/London:20211007T170000
DTSTAMP:20260425T121218
CREATED:20210705T123316Z
LAST-MODIFIED:20210705T131427Z
UID:8238-1633593600-1633626000@www.m4rd.org
SUMMARY:RAREsummit21
DESCRIPTION:Hear from and engage with a range of stakeholders pioneering change across the rare disease landscape…\n\n\n\n\n\n\n\nCRDN‘s RAREsummit21 is a platform for change. It is the infrastructure that unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience\, the journey towards better diagnosis\, treatment and support for patients and their families is smoother and more certain. \n7th October 2021 will see the 5th RAREsummit – a flagship CRDN event gathering over 300 great minds in rare diseases to make connections\, exchange ideas and openly debate possibilities. \nIt’s more than an event – it’s where the magic happens. A powerful movement and platform for change that provides the right ingredients and ecosystem for a better future\, where productive collaborations are nurtured and flourish for future patient impact. \nThe aim of RAREsummit21 is: \n\nto raise awareness of rare conditions and their impact\nto showcase exemplars of impactful patient group collaboration with other stakeholders\nto bring all stakeholders in rare diseases together to drive patient group\, researcher and industry partnering opportunities\nto give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners\nto improve the lives of rare disease patients\, together\, with greater efficiency\, collaboration and success
URL:https://www.m4rd.org/event/raresummit21/
LOCATION:ONLINE
CATEGORIES:Conference,Networking,Rare Diseases,Showcase,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/RS21-logo-and-date.png
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260425T121218
CREATED:20210907T122346Z
LAST-MODIFIED:20210907T122346Z
UID:8371-1634515200-1634687999@www.m4rd.org
SUMMARY:NORD Breakthrough Summit
DESCRIPTION:NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme.\nThe summit will discuss the latest updates on: \n\nrare disease diagnosis and research\ngenetics and genomics\ndrug development and patient engagement\nFDA oversight\n\nA limited number of free passes may be available to patient advocates\, students and patients.  Click here to apply.
URL:https://www.m4rd.org/event/nord-breakthrough-summit/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Genomics,Networking,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/09/Screenshot-2021-09-07-at-13.16.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211101T120000
DTEND;TZID=Europe/London:20211101T124500
DTSTAMP:20260425T121218
CREATED:20211006T131231Z
LAST-MODIFIED:20211006T131231Z
UID:8471-1635768000-1635770700@www.m4rd.org
SUMMARY:Rare disease education: insights on what clinicians know\, want and need
DESCRIPTION:SAVE THE DATE \nAn opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on rare diseases and best practices in rare disease education. \nDr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead at Mendelian Health) will join Medscape’s Clinical Strategist S Christy Rohani-Montez and Director of Strategic Partnerships\, Jennifer Bomberger to discuss rare disease education and give insights on what clinicians know\, want and need!
URL:https://www.m4rd.org/event/rare-disease-education-insights-on-what-clinicians-know-want-and-need/
LOCATION:ONLINE
CATEGORIES:clinical,Lunch & learn,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/1633446900824.jpeg
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211117
DTEND;VALUE=DATE:20211119
DTSTAMP:20260425T121218
CREATED:20210825T091828Z
LAST-MODIFIED:20210825T091828Z
UID:8345-1637107200-1637279999@www.m4rd.org
SUMMARY:Vasculitis: From cell to service
DESCRIPTION:This two-day free webinar is composed of a multi-professional faculty reflecting the multi-systemic nature of vasculitis\, comprehensive updates on key UKIVAS group activities\, and research and clinical updates in the field of vasculitis will be addressed. \nThis webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS.  \nAll specialities interested in the management of vasculitis are invited to attend in both paediatric and adult medicine.  \nThis webinar will:    \n\nDescribe UKIVAS registry activity with an outline of data linkage projects \nExamine recent service development\, quality improvement initiatives and multi-professional communication networks \nProvide updates on bioresource\, basic science and clinical research \nOutline advances in COVID-19 management and the impact of the pandemic on patients with vasculitis \nLearn of newer therapies\, steroid minimisation approaches and trial pathways across a broad range of the vasculitides \nHighlight advances in paediatric vasculitis and communication  \n\nCPD learning applied.
URL:https://www.m4rd.org/event/vasculitis-from-cell-to-service/
LOCATION:Webinar
CATEGORIES:clinical,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/neq02-enews.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211130T190000
DTEND;TZID=Europe/London:20211130T203000
DTSTAMP:20260425T121218
CREATED:20211014T080745Z
LAST-MODIFIED:20211014T080851Z
UID:8488-1638298800-1638304200@www.m4rd.org
SUMMARY:Top tips for managing rare disease in GP
DESCRIPTION:The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a ‘Top Tips for Managing Rare Disease in GP’ evening. Topics provided aim to help you manage patients with rare disease.\nThe event is hosted by the RCGP Northern Ireland and some aspects may be NI focused\, but we welcome GPs from any nation to join if interested. \nSpeakers include: \n\nDr Caoimhe McKenna\, Clinical Genetic Registrar\nDr Genevieve Allum\, GP\nDr Lucy McKay\, CEO M4RD\nProf AJ McKnighht\, Queens University\, Belfast\n\nFor any queries or further information please contact Fiona Monaghan fiona.monaghan@rcgp.org.uk 
URL:https://www.m4rd.org/event/top-tips-for-managing-rare-disease-in-gp/
LOCATION:ONLINE
CATEGORIES:clinical,General Practice,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/FBfIgNeXoAQmPnI.jpeg
ORGANIZER;CN="Northern Ireland Rare Disease Partnership (NIRDP)":MAILTO:info@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211214T110000
DTEND;TZID=Europe/London:20211214T123000
DTSTAMP:20260425T121218
CREATED:20211119T093833Z
LAST-MODIFIED:20211119T093833Z
UID:8625-1639479600-1639485000@www.m4rd.org
SUMMARY:Maximising engagement with healthcare professionals
DESCRIPTION:Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way.\nMost rare diseases are not concentrated in one area or country and do not affect one singular body system\, which makes finding healthcare professionals (HCPs) or specialists who understand them a real challenge for patients and patient organisations. Yet\, it is often a top strategic priority for patient organisations to find and engage with these professionals to drive faster diagnoses\, better understanding of and research into rare conditions. \nThis can be a real challenge when most HCPs have a very limited knowledge of rare conditions. HCPs often look straight to google for their research where they can be met with misinformation and do not always find the patient organisations that are the real experts straight away. Thus\, it falls onto the shoulders of these patient organisations to make themselves more visible and receptive to engagement with healthcare professionals. Whether at a basic operational level\, an organisational level\, through external collaborations or even by working with the organisations such as the NHS and NICE. \n\n\n\n\nThis webinar will:  \n\n\n\n\n\n\n\n\n\n\n\n\n\nExplore the different levels on which patient organisations can base their engagement with medical professionals\nCover the practical things patients can do (no matter what size or capacity) to engage efficiently and sustainably with HCPs\nHighlight case studies from across the rare space of what different patient groups are doing\n\nPlease note: This is the first in a series of two webinars which will explore engagement with HCPs. \n\n\n\n\n 
URL:https://www.m4rd.org/event/maximising-engagement-with-healthcare-professionals/
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
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ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220201
DTEND;VALUE=DATE:20220204
DTSTAMP:20260425T121218
CREATED:20211103T132333Z
LAST-MODIFIED:20211103T132333Z
UID:8540-1643673600-1643932799@www.m4rd.org
SUMMARY:The International Rare Disease Showcase
DESCRIPTION:The International Rare Disease Showcase is a virtual event like no other\, bringing everyone together including\, patient groups\, researchers\, medical professionals\, industry representatives and of course patients themselves.\nHere’s what to expect:  \n\nThree days of interactive sessions led by global experts and advocates\nConversations on policy\, patient advocacy\, access and approval\, new technologies\, research and data collection with an international focus!\nPanel discussions and breakout rooms where attendees will be able to interact with speakers and other attendees\nA worldwide\, diverse and multi-stakeholder audience\nPatient group and industry virtual exhibition booths and dedicated patient group poster zone\nAll material will be available to view on-demand for 21 days after the event
URL:https://www.m4rd.org/event/the-international-rare-disease-showcase/
LOCATION:ONLINE
CATEGORIES:Conference,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-12.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220201T183000
DTEND;TZID=Europe/London:20220201T200000
DTSTAMP:20260425T121218
CREATED:20211006T143630Z
LAST-MODIFIED:20211006T143630Z
UID:8475-1643740200-1643745600@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Diagnostic delay in rare disease
DESCRIPTION:This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions.\nTo remediate this\, a large group of UK-based and cross-sector stakeholders\, known as ARDEnt\, assembled to ensure the capture and analysis of what was truly happening to the fragile rare disease infrastructure.\nJointly organised with ARDEnt\, this webinar will examine how the diagnostic process in rare diseases was affected by the response to the COVID-19 pandemic. \nThe journey to a rare diagnosis is already recognised as a long and arduous process and has been coined the ‘Diagnostic Odyssey’. The ARDEnt team found that diagnostic delay has been further exacerbated during the pandemic and the consequences of this will be felt for years to come as the population of people living with an undiagnosed rare disease will have grown bigger in 2020.  \nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1\, to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-diagnostic-delay-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220208T183000
DTEND;TZID=Europe/London:20220208T200000
DTSTAMP:20260425T121218
CREATED:20211006T143558Z
LAST-MODIFIED:20211006T143558Z
UID:8478-1644345000-1644350400@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination
DESCRIPTION:During times of global disruption\, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions.\nJointly organised with ARDEnt\, this webinar will examine how the reduction to healthcare\, social services and SEND (special educational needs and disabilities) education has had a devastating impact that will be felt long after COVID-19 restrictions are lifted.\nAs the world begins to find its new normal we must ensure we are “making the unseen seen”. \nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1\, to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-rare-disease-health-and-social-care-coordination/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220209T180000
DTEND;TZID=Europe/London:20220209T200000
DTSTAMP:20260425T121218
CREATED:20210820T112939Z
LAST-MODIFIED:20210923T113010Z
UID:8341-1644429600-1644436800@www.m4rd.org
SUMMARY:The Unusual Suspects: rare disease in everyday medicine
DESCRIPTION:The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February!\nThe M4RD Annual Symposium has been a popular event in the rare disease calendar for many years\, allowing healthcare professionals at all levels\, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole\, with a large focus on improving awareness and management. \nFollowing the success of last year’s online event\, we will be live streaming from 1 Wimpole Street. \nThis is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease.We will be hearing from patients\, parents\, advocates and clinicians. \nBOOK NOW
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine/
LOCATION:LIVE STREAM
CATEGORIES:Conference,Networking,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/M4RD2020-114-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220215T180000
DTEND;TZID=Europe/London:20220215T203000
DTSTAMP:20260425T121218
CREATED:20211006T143455Z
LAST-MODIFIED:20211006T143455Z
UID:8480-1644948000-1644957000@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Clinical trials and drug development in rare disease
DESCRIPTION:This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations\, travel restrictions\, shielding\, trial-sites being repurposed to COVID-19 wards\, research staff either being called to the front- line or called to replace others who were\, have compounded the already fragile world of clinical development for rare diseases.\nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-clinical-trials-and-drug-development-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220222T180000
DTEND;TZID=Europe/London:20220222T203000
DTSTAMP:20260425T121218
CREATED:20211006T143422Z
LAST-MODIFIED:20211006T143422Z
UID:8482-1645552800-1645561800@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
DESCRIPTION:Jointly organised with ARDEnt\, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework\, published in January 2021.\nThe webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.\nRead about these recommendations in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-looking-to-the-future-with-the-uk-rare-diseases-framework/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220228T183000
DTEND;TZID=Europe/London:20220228T200000
DTSTAMP:20260425T121218
CREATED:20220201T112556Z
LAST-MODIFIED:20220201T112556Z
UID:9074-1646073000-1646078400@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize: Continuing your involvement in rare disease
DESCRIPTION:Learn how you can further your interest and get more involved in the world of rare diseases to benefit both yourself and the rare community\n\n\n\n\n\n\n\nThe Student Voice Prize is delighted to invite you to our virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get further involved.  \nThe event will be an informal opportunity for you to meet new people and share your experiences of the rare disease community and entering the Student Voice Prize. You’ll also learn how you can build on your current knowledge to drive your personal and professional development whilst helping those in the rare disease community. \nWho is this event for?  \n\nPrevious entrants of the Student Voice Prize\nMedical students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders who have been involved in the Student Voice Prize in the past\nRare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!\n\nWhy should you attend?  \n\nRare diseases are collectively common\, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions.\nRare diseases are gaining increasing momentum as pressing health priorities worldwide\, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change\, raise awareness and drive your own personal development.\n\nThe Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare disease. This is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.
URL:https://www.m4rd.org/event/beyond-the-student-voice-prize-continuing-your-involvement-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:Networking,Rare Diseases,Student Voice Prize,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220517
DTEND;VALUE=DATE:20220520
DTSTAMP:20260425T121218
CREATED:20220408T090704Z
LAST-MODIFIED:20220408T090704Z
UID:9276-1652745600-1653004799@www.m4rd.org
SUMMARY:Online workshop: Understanding access and reimbursement
DESCRIPTION:Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process\, especially for patient groups who are working to secure research into and treatments for their rare conditions.\nHowever\, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in securing reimbursement can be intimidating to patient groups and act as a real barrier to engagement.  \nThis workshop will outline the basics of access and reimbursement: what it means\, when it happens\, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for. Attendees will leave feeling more confident in what the access and reimbursement process involves and where they can add value. \nDay one: Access and reimbursement 101\, back to basics\nDay two: Understanding the NICE appraisal process\nDay three: where can patient groups get involved?
URL:https://www.m4rd.org/event/online-workshop-understanding-access-and-reimbursement/
LOCATION:ONLINE
CATEGORIES:Patient Information Day,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/04/Asset-8-e1649337904516.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220608T140000
DTEND;TZID=Europe/London:20220608T153000
DTSTAMP:20260425T121218
CREATED:20220524T133648Z
LAST-MODIFIED:20220524T133648Z
UID:9518-1654696800-1654702200@www.m4rd.org
SUMMARY:Understanding Rare Disease: Communicating with Patients
DESCRIPTION:Sign up to learn about the role of communication in rare disease from those affected directly\, in an interactive FREE virtual event!\nAbout this event\nThe event will kick off with a session from our guest speaker\, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions\, such as rare disease. Attendees will then have the chance to speak directly with some of the I am Number 17 campaign changemakers and hear first-hand about how their diagnostic odysseys came to an end\, through perseverance and working together with the help of their HCP/Consultants. \nWhat will you get from attending this event?\n• Gain experience from communicating directly with those affected by rare disease \n• Improve your understanding of rare disease and how to react when faced with a potential rare disease \n• Develop your communication skills (notability how to share sensitive information and break bad news) \n• Gain a certificate of attendance to exhibit your enhanced learning \nWe hope that learning from real-life examples will provide you with tangible learnings to take along your medical careers and ultimately equip you to Find the 1 in 17 in the future… \nAll medical students are welcome to attend the event! \nPlease note this event may be beneficial for students preparing for upcoming OSCE examinations. \nWe look forward to seeing you there and learning together! \nThis event is initiated and funded by Takeda UK\, run together with Medics4RareDisease.
URL:https://www.m4rd.org/event/understanding-rare-disease-communicating-with-patients/
CATEGORIES:Medical Students,Rare Diseases,Webinar,workshop
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/05/https-cdn.evbuc_.com-images-283451039-908956374363-1-original.20220512-111502.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220613T173000
DTEND;TZID=Europe/London:20220613T183000
DTSTAMP:20260425T121218
CREATED:20220504T084323Z
LAST-MODIFIED:20220504T084323Z
UID:9302-1655141400-1655145000@www.m4rd.org
SUMMARY:The genetics of intellectual disability: Episode 15
DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability\, as well as explore what challenges remain in this area. \nOur speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the diagnostic experience. This webinar is also a special chance to discuss what the experience of receiving a genetic diagnosis is like for patients and their families. \nDuring this webinar you will: \n\nUnderstand what we do know about the genetic origin of intellectual disabilities\nAppreciate the challenges and opportunities in research in this field\nRecognise how post-diagnostic research is important in order to understand the different ways people experience intellectual disability\nValue the insights gained from those who have received a genetic diagnosis of intellectual disability \n\nThis meeting is in association with the RSM Intellectual Disability Section. \nThe genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine\, this series of talks will focus on the role of genetics in different areas of health and wellbeing.
URL:https://www.m4rd.org/event/the-genetics-of-intellectual-disability-episode-15/
LOCATION:LIVE STREAM
CATEGORIES:Genetics,Rare Diseases,Royal Society of Medicine,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220618
DTSTAMP:20260425T121218
CREATED:20220406T083528Z
LAST-MODIFIED:20220406T083528Z
UID:9258-1655424000-1655510399@www.m4rd.org
SUMMARY:Hypermobility syndrome: A practical guide to assessment\, management and care
DESCRIPTION:Join the RSM at this multidisciplinary event which will provide a valuable overview and a broader understanding of hypermobility syndrome and the care of these patients. \nExperts in their field will present a series of talks that will inform delegates about practical guides for the assessment and management of this condition and will explore how community care can make a difference. \nKey speakers include: Professor Lara Bloom\, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration\, Penn State College of Medicine and CEO of The Ehlers-Danlos Society\, Dr James Kustow\, Consultant Psychiatrist and Medical Director\, The Groves\, Dr Jane Simmonds\, Co-deputy Director of Education and MSc Advanced Paediatric Physiotherapist\, and many more. \n  \nBook in-person event here \nBook live stream here
URL:https://www.m4rd.org/event/hypermobility-syndrome-a-practical-guide-to-assessment-management-and-care/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Rare Diseases,Royal Society of Medicine
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/unnamed-25.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220627
DTEND;VALUE=DATE:20220702
DTSTAMP:20260425T121218
CREATED:20220315T114405Z
LAST-MODIFIED:20220315T114405Z
UID:9161-1656288000-1656719999@www.m4rd.org
SUMMARY:11th European Conference on Rare Disease & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. \nECRD 2022 will take place online on 27 June -1 July. \nLeading\, inspiring and engaging all stakeholders to take action\, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates\, policy makers\, researchers\, clinicians\, healthcare professionals\, healthcare industry representatives\, academics\, payers\, regulators and Member State representatives. \nThis 11th edition follows a pivotal two-year Rare 2030 Foresight Study\, supported by the European Parliament and European Commission\, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030. \nThe concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone\, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. \nThis ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.
URL:https://www.m4rd.org/event/11th-european-conference-on-rare-disease-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
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END:VEVENT
END:VCALENDAR