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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201111T110000
DTEND;TZID=Europe/London:20201112T120000
DTSTAMP:20260406T003101
CREATED:20201009T082949Z
LAST-MODIFIED:20201009T082949Z
UID:7210-1605092400-1605182400@www.m4rd.org
SUMMARY:Vasculitis: registries\, pathways and therapeutics
DESCRIPTION:This free 2 day webinar will provide a comprehensive update on all UKIVAS group activities and plans for the future\, along with recent clinical and research updates in vasculitis.\nThis is a multidisciplinary webinar where adult and paediatric vasculitis management will be examined. \nThe themes highlighted are relevant to; renal\, rheumatology\, respiratory\, ENT\, dermatology and all other disciplines involved in vasculitis management. \nThe RSM is proud to partner this webinar with UKIVAS\, a national rare diseases group co-chaired by Professor Mark Little and Dr Neil Basu. \nWebinar topics include: \n\nThe assessment and treatment of organ-specific manifestation in systemic vasculitis.\nUKIVAS registry activity update with an outline of recent national bioresource and genomic developments.\nNew therapies in complement\, new biologic combination approaches and trial pathways.\nService development\, quality improvement and communication networks.
URL:https://www.m4rd.org/event/vasculitis-registries-pathways-and-therapeutics/
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200926
DTEND;VALUE=DATE:20200927
DTSTAMP:20260406T003101
CREATED:20200914T195355Z
LAST-MODIFIED:20200914T195355Z
UID:7160-1601078400-1601164799@www.m4rd.org
SUMMARY:Wolfram Syndrome virtual conference
DESCRIPTION:Planning is ongoing for The Wolfram Syndrome UK’s 9th annual conference\, which this year will now be a virtual conference on Zoom taking place over two days: Saturday 19th and Saturday 26th September.\n19th September\n2.00-3.00 pm Urology Presentation – Mr Liam McCarthy from Birmingham Children’s Hospital \n  \n26th September\n9.30-10.15am Ophthalmology workshop #1 – Talia Treen from Queen Elizabeth Hospital\, Birmingham \n10.30-11.15am Ophthalmology workshop #2 – Talia Treen from Queen Elizabeth Hospital\, Birmingham \n11.30am-12.15pm Speech and Language workshop for swallowing/choking – Georgie Smith from Queen Elizabeth Hospital \n1.00-2.00pm Lifelong treatment with GLP1 receptor agonist in rat model of Wolfram syndrome – Drs Mario Plaas and Anton Terasmaa\, Estonia \n2.15-3.00pm TREATWolfram Update – Prof Tim Barrett and Dr Ben Wright – Birmingham Children’s Hospital and Queen Elizabeth Hospital\, Birmingham. \n3.15-4.15pm Optic nerve involvement in Wolfram syndrome – Mr Patrick Yu Wai Man\, Cambridge University and Moorfields Eye Hospital. \nHow to register for the workshops has been sent out by email to WSUK members only due to restrictions on numbers.  Programme is subject to change.  Email admin@wolframsyndrome.co.uk for more details on how to register for each webinar.
URL:https://www.m4rd.org/event/wolfram-syndrome-virtual-conference/
LOCATION:Online
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/09/DSCN1408-scaled-e1600112695312.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200716T150000
DTEND;TZID=Europe/London:20200716T154500
DTSTAMP:20260406T003101
CREATED:20200710T151519Z
LAST-MODIFIED:20200710T151519Z
UID:6885-1594911600-1594914300@www.m4rd.org
SUMMARY:Educating physicians in rare disease - Reducing the diagnostic odyssey and improving outcomes
DESCRIPTION:This webinar will introduce Medics 4 Rare Diseases whose mission is to drive an attitude change towards rare diseases amongst medical students and doctors in training. In addition Lucy McKay\, CEO of Medics 4 Rare Diseases and Gavin Jones\, Director of Rare Disease\, will be discussing core educational principles required to deliver better patient experience and outcomes for those living with rare diseases.
URL:https://www.m4rd.org/event/educating-physicians-in-rare-disease-reducing-the-diagnostic-odyssey-and-improving-outcomes/
LOCATION:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/07/Gavin-and-Lucy-McKay-005.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200622T123000
DTEND;TZID=Europe/London:20200622T133000
DTSTAMP:20260406T003101
CREATED:20200530T124325Z
LAST-MODIFIED:20200530T124959Z
UID:6798-1592829000-1592832600@www.m4rd.org
SUMMARY:COVID-19 and rare diseases: Risks and opportunities posed by the pandemic
DESCRIPTION:This unique webinar unites experts from primary care\, advocacy and medical genetics within the rare disease sector to discuss the impact of the virus on the rare disease community.\nParticipants will hear about the short and long-term impact of shielding\, consider how to best protect vulnerable populations in the future\, and reflect on the potential beneficial changes to services as a result of the pandemic – most acutely felt by people with complex diseases who depend on an intricate framework of support. \nSpeakers:\nMs Lindsay Weaver\, CEO of Metabolic Support UK \nDr Will Evans\, Clinical practice GP and academic GP\, University of Nottingham & Chair of NP-UK \nDr Elizabeth Forsythe\, Specialist Registrar in Clinical Genetics at Great Ormond Street Hospital
URL:https://www.m4rd.org/event/covid-19-and-rare-diseases-risks-and-opportunities-posed-by-the-pandemic/
LOCATION:Webinar
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260406T003101
CREATED:20200122T185220Z
LAST-MODIFIED:20200318T112441Z
UID:6255-1589500800-1589673599@www.m4rd.org
SUMMARY:The 10th European Conference on Rare Diseases & 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 future rare disease policies.\nThe event draws together more than 800 participants from over 50 countries around the world. Leading\, inspiring and engaging all stakeholders to take action\, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives\, policy makers\, researchers\, clinicians\, industry representatives\, payers and regulators.
URL:https://www.m4rd.org/event/the-10th-european-conference-on-rare-diseases-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/ecrd2020-visuel-933x250.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200313T100000
DTEND;TZID=Europe/London:20200313T153000
DTSTAMP:20260406T003101
CREATED:20200221T123807Z
LAST-MODIFIED:20200221T123807Z
UID:6477-1584093600-1584113400@www.m4rd.org
SUMMARY:Medicine and Me: Living with pulmonary fibrosis
DESCRIPTION:Jointly organised with Action for Pulmonary Fibrosis\, this meeting will give you an understanding of what it is like to live with Idiopathic Pulmonary Fibrosis (IPF) from people living with the disease.\nPulmonary fibrosis (PF) is thought to affect around 70\,000 people in the UK. One of the most aggressive and common forms of PF is Idiopathic Pulmonary Fibrosis (IPF). Idiopathic means it has no known cause. IPF normally affects people over 50 and is slightly more common in men than women. There are limited treatments and there is no cure. Life expectancy can be between three to five years following diagnosis\, and around 6\,000 people die from it every year in the UK. \nLearn more about current approaches to diagnosis\, treatment and management of IPF from the perspective of patients\, their carers and clinicians\, as well as gaining an insight into the psychological and emotional wellbeing of those living with IPF. We’ll also explore the cutting edge research into improving outcomes and palliation\, as we consider areas of inquiry likely to deliver step changes in treatments.
URL:https://www.m4rd.org/event/medicine-and-me-living-with-pulmonary-fibrosis/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/02/4e894465665ea68bb26392254b8e37dd8d4bc414-e1582288181148.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200224T100000
DTEND;TZID=Europe/London:20200224T180000
DTSTAMP:20260406T003101
CREATED:20200121T180232Z
LAST-MODIFIED:20200121T180232Z
UID:6211-1582538400-1582567200@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2020 Conference
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its seventh consecutive year!\nFindacure’s 7th annual conference will showcase excellence in the development of repurposed drugs for rare disease patients\, highlight the potential for patient group-led innovation\, and emphasise repurposing as a valid business model for orphan drug development in industry. Held in celebration of Rare Disease Day\, our event will unite the rare disease community to share in groundbreaking drug repurposing projects that can bring real change to those living with rare diseases.
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2020-conference/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Conference,Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2020/01/Picture1-e1579629397364.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200219T123000
DTEND;TZID=Europe/London:20200219T180000
DTSTAMP:20260406T003101
CREATED:20190911T203158Z
LAST-MODIFIED:20191224T095107Z
UID:5812-1582115400-1582135200@www.m4rd.org
SUMMARY:The unusual suspects: rare diseases in everyday medicine
DESCRIPTION:Medics 4 Rare Diseases and the RSM will bring a faculty of top speakers to explore how rare diseases are relevant in everyday clinical medicine\nThis event is aimed at clinicians at all stages of their training to explain why rare diseases are important to everyday medicine. We will explore how generalists can approach patients with rare diseases and become advocates for them. We will hear from a patient who suffered a long and arduous journey to diagnosis as a child and now uses her illustrations to tell her story. We will also learn about drug repurposing. \nTopics include:\n\nHow rare diseases are relevant to every doctor’s career in medicine\nA patient’s perspective\nReducing the diagnostic odyssey in rare diseases\nDrug Repurposing in Rare Diseases\nHow to be a rare advocate/ally\nHow the work of Medics 4 Rare Diseases and the RSM Genetics Section play a role in rare disease education\n\nThis year we are really excited to be able to provide a limited number of student travel bursaries for our annual symposium at The Royal Society of Medicine to enable students who live outside of London to attend our event.  Please see our website for T&Cs\nEarly Bird Rates available until 8 January\nRSM member: £15-£25 \nNon member: £20-£30 \nRegistration starts at 12.30 and the event begins at 1pm. \nBOOK NOW
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-diseases-in-everyday-medicine/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2018/10/M4RD-Annual-Symposium.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200203T180000
DTEND;TZID=Europe/London:20200203T210000
DTSTAMP:20260406T003101
CREATED:20200121T174830Z
LAST-MODIFIED:20200121T175410Z
UID:6199-1580752800-1580763600@www.m4rd.org
SUMMARY:Rare disease spotlight: Aspergillosis
DESCRIPTION:In collaboration Barts & The London\, we will be shining the spotlight on Aspergillosis\nFran Pearson\, a patient who was diagnosed with Aspergillosis and Dr Darius Armstrong\, a consultant in Infectious Disease and Mycology will be hosting this event. \nYou will have the opportunity to learn more about the patient’s experience of being diagnosed with a rare infectious disease and the challenges faced by doctors when diagnosing patients with infectious diseases.
URL:https://www.m4rd.org/event/rare-disease-spotlight-aspergillosis/
LOCATION:Barts & The London School of Medicine – Garrod Building\, London\, E1 2\, United Kingdom
CATEGORIES:Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/78594149_1024621827885798_1782227981196853248_o-2-e1579628377278.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200128T180000
DTEND;TZID=Europe/London:20200128T193000
DTSTAMP:20260406T003101
CREATED:20200121T173706Z
LAST-MODIFIED:20200121T195956Z
UID:6194-1580234400-1580239800@www.m4rd.org
SUMMARY:Hit and Miss: Genetic diagnosis\, misdiagnosis and learning
DESCRIPTION:A potpourri of genetic diagnosis\, misdiagnosis and learning experiences\nKCL Medical Genetics Society’s second lecture of the year will held by Dr Willie Reardon\, sharing his experience as a Consultant Clinical Geneticist at Great Ormond St Hospital for Children\, Hospital for Sick Children Toronto and Our Lady’s Children’s Hospital.
URL:https://www.m4rd.org/event/hit-and-miss-genetic-diagnosis-misdiagnosis-and-learning/
LOCATION:Kings College London Guys Campus\, New Hunt's House\, London\, SE1 9RT\, United Kingdom
CATEGORIES:Genetics,Lectures
ORGANIZER;CN="KCL Medical Genetics Society":MAILTO:kclmedgensoc@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191122T133000
DTEND;TZID=Europe/London:20191122T143000
DTSTAMP:20260406T003101
CREATED:20190922T123925Z
LAST-MODIFIED:20191008T153342Z
UID:5830-1574429400-1574433000@www.m4rd.org
SUMMARY:A Puff of Smoke Talk and Workshop w/ author and artist Sarah Lippett
DESCRIPTION:A Puff of Smoke (published by Jonathan Cape 7th November) is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah as she talks through the process of revisiting her past and piecing it back together as a graphic memoir. The talk will be followed by a short workshop where participants are invited to create sequential narratives based on their own lived experiences. No drawing experience necesssary.  Book your place now.
URL:https://www.m4rd.org/event/a-puff-of-smoke-talk-and-workshop-w-author-and-artist-sarah-lippett/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:Rare Diseases,workshop
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/A-Puff-of-Smoke-Cover-e1569156157319.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191122T083000
DTEND;TZID=Europe/London:20191122T170000
DTSTAMP:20260406T003101
CREATED:20190810T141747Z
LAST-MODIFIED:20190816T122953Z
UID:5650-1574411400-1574442000@www.m4rd.org
SUMMARY:Direct-to-consumer genetic testing: Health and ancestry
DESCRIPTION:The direct to consumer genetic testing is on the rise worldwide\, and while these tests provide people access to their genetic information without necessarily involving a healthcare provider\, the patients search for their doctors’ advice on the results.\nFrom genealogy to health\, healthcare providers are expected to be able to respond to the patients’ questions and be well informed of the benefits and risks of genetic testing direct to the public. \nThrough multidisciplinary lectures from renowned specialists as well as lively panel discussions\, this event will give you a comprehensive view of the tests available and their implications. The meeting will close with a rerun of the dynamic 2018 Varsity debate on the subject and votes from the audience. \nMeeting topics: \n– The genetic tests on offer\, both for health and for ancestry.\n– Insight into the implications of DTC genetic testing.\n– Understand the potential impact of DTC in liver cirrhosis\n– Discuss the ethical concerns and challenges posed by DTC\n– Know the precision of ancestral DNA testing\n– Understand the impact of ancestral testing on populations \nEarly bird pricing available until 18 August 2019
URL:https://www.m4rd.org/event/direct-to-consumer-genetic-testing-health-and-ancestry/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191101T180000
DTEND;TZID=Europe/London:20191101T210000
DTSTAMP:20260406T003101
CREATED:20190922T122007Z
LAST-MODIFIED:20191008T153121Z
UID:5824-1572631200-1572642000@www.m4rd.org
SUMMARY:A Puff of Smoke Book Launch and Exhibition
DESCRIPTION:A Puff of Smoke is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah to celebrate the launch of the A Puff of Smoke on the 1st of November 6-9pm at The Centre for Better Health in London. Copies of the book will be available for purchase. \nDrinks will be available and everyone is welcome! \nConfirm your attendance on Evenbrite for the chance to WIN a FREE signed copy of A Puff of Smoke.
URL:https://www.m4rd.org/event/a-puff-of-smoke-book-launch-and-exhibition/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:book launch,exhibition,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/posterforweb-e1569156065729.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191011T133000
DTEND;TZID=Europe/London:20191011T163000
DTSTAMP:20260406T003101
CREATED:20191002T130612Z
LAST-MODIFIED:20191002T130612Z
UID:5861-1570800600-1570811400@www.m4rd.org
SUMMARY:Rett UK Regional Professionals Day
DESCRIPTION:This is a fantastic opportunity to learn more about this rare and complex disorder in an informal session where you have lots of opportunities to ask questions.\nWith over 30 years’ experience\, Rett UK is the only UK charity providing professional family support services and training for anyone involved in supporting someone with Rett syndrome. \nAimed at SLTs\, OTs\, GPs and carers\, this is a free event where the Rett UK team get the opportunity to educate you on this rare neurological disorder\, to answer questions and to inform you of other future events they will be holding.
URL:https://www.m4rd.org/event/rett-uk-regional-professionals-day/
LOCATION:THE HUB\, Easton Street\, High Wycombe\, Buckinghamshire\, HP11 1NJ\, United Kingdom
CATEGORIES:Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/10/RETT-UK-LOGO.jpg
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191008T100000
DTEND;TZID=Europe/London:20191008T170000
DTSTAMP:20260406T003101
CREATED:20190619T194009Z
LAST-MODIFIED:20190827T142944Z
UID:5250-1570528800-1570554000@www.m4rd.org
SUMMARY:The Manchester Rare Disease Showcase
DESCRIPTION:Findacure’s Rare Disease Showcases are a celebration of innovative rare disease projects across the UK. As a world leader in rare research\, exceptional examples of rare disease practice can be found all over the country. Their touring event series heads to local regions to give them the attention they deserve.\nAttendees can expect: \n\nPresentations from rare experts in Manchester’s local area\, including patients\, support groups\, clinicians and researchers.\nHighlights of excellent progress in academic\, healthcare\, industry and patient advocacy\nTwo lightning talk sessions for delegates to propose and share their own rare stories\nAmple patient group and charity exhibitors from across the UK\nDedicated time to network with North West England’s rare community\n\n  \nFindacure are offering a number of exhibition stands to patient organisations and charities completley free of charge. If you are interested in exhibiting\, please email maryrose@findacure.org.uk.
URL:https://www.m4rd.org/event/the-manchester-rare-disease-showcase/
LOCATION:The Bridgewater Hall\, Lower Mosley Street\, Manchester\, Lancashire\, M2 3WS\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/manchester-Findacure-_AG28206-e1560972616183.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191008T084500
DTEND;TZID=Europe/London:20191008T163000
DTSTAMP:20260406T003101
CREATED:20190810T142807Z
LAST-MODIFIED:20190816T122908Z
UID:5652-1570524300-1570552200@www.m4rd.org
SUMMARY:The 33rd symposium: Cystic fibrosis in children and adults
DESCRIPTION:Learn from specialists which children with symptoms need to be seen earlier and how to deal with health issues such as visual problems and poor dental hygiene. Explore unusual paediatric presentations that do not have a clear pathway to diagnosis and need multidisciplinary management.\nThis is a joint event with the Odontology Section and therefore the programme will highlight key areas such as tooth decay in children and acute dental problems. \nTopics include: \n\nHow to identify key pointers to diagnosis\nCurrent best practice\nHow to manage unusual paediatric presentations\nThe value of effective communication between specialities
URL:https://www.m4rd.org/event/the-33rd-symposium-cystic-fibrosis-in-children-and-adults/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/08/unnamed-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191003T090000
DTEND;TZID=Europe/London:20191004T133000
DTSTAMP:20260406T003101
CREATED:20190822T091840Z
LAST-MODIFIED:20190822T091954Z
UID:5756-1570093200-1570195800@www.m4rd.org
SUMMARY:Pompe Preceptorship
DESCRIPTION:Pompe Preceptorship\, hosted by Mark Holland from the Metabolic Unit\, Manchester\nTopics to be included: \n\nBiochemistry & Genetics of Pompe Disease\nInfantile & Adult Pompe Disease\nMetabolic Myopathy\nBenefits of exercise in Pompe Disease\nNutrition in Pompe Disease\nRespiratory function\nPalliative care\nResearch in Pompe\nFuture of Gene Therapy\nAGSD – Patient Society\nPatient’s Experience of living with the condition\n\nThis event is open to all medical staff but places are limited.  Funding for this event is available. \nFor further information and to request a registration form please contact:\nKaren Wynne\, Mark Holland Metabolic Unit\, Email: karen.wynne@srft.nhs.uk \nTelephone: 0161 206 4365
URL:https://www.m4rd.org/event/pompe-preceptorship/
LOCATION:Mercure Hotel Manchester\, Manchester Piccadilly\, Manchester\, M139WU\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190923T083000
DTEND;TZID=Europe/London:20190923T173000
DTSTAMP:20260406T003101
CREATED:20190606T205158Z
LAST-MODIFIED:20190606T210400Z
UID:5167-1569227400-1569259800@www.m4rd.org
SUMMARY:RAREsummit19
DESCRIPTION:RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progress.\nWe’ll be highlighting exemplars of patient\, patient advocacy groups and carers involvement in the development of drugs\, healthcare and assistive technologies. Join us at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases. \nEarly bird tickets available.  Tiered pricing.
URL:https://www.m4rd.org/event/raresummit19/
LOCATION:Wellcome Genome Campus Conference Centre
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/RS19-logo-800px-horz.png
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190921T124500
DTEND;TZID=Europe/London:20190924T170000
DTSTAMP:20260406T003101
CREATED:20190516T163928Z
LAST-MODIFIED:20190520T150742Z
UID:4834-1569069900-1569344400@www.m4rd.org
SUMMARY:The NF Conference
DESCRIPTION:Are you a junior doctor looking to develop your rare disease knowledge and engage with patients and their families?\nM4RD are supporting Childhood Tumour Trust to find a volunteer to join their Medical Advisory Board. The medical advisory board is comprised of a variety of different specialists\, including occupational health specialists\, psychologists\, nurses and GPs. CTT are now seeking to appoint another qualified and registered doctor to join the team. The board supports those living with Neurofibromatosis Type 1 through a Facebook group\, events and producing educational resources. \n\nThe successful applicant will also have the opportunity to be sponsored by CTT to attend the International NF Conference in San Francisco in September 2019. At the conference they will be able to learn all about NF1 and report back on advances that are being made in this area of medicine. \n\nYou must be a minimum grade FY2 Doctor\nNo prior knowledge of NF1 is required\n\n\nTo find out how you could make a real difference to those living with NF1 and for other terms and conditions\, email vanessa@childhoodtumourtrust.og.uk
URL:https://www.m4rd.org/event/the-nf-conference/
LOCATION:Hyatt Regency San Francisco\, 5 Embarcadero Center\, San Francisco\, CA\, 94111\, United States
CATEGORIES:Conference,Neurology
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/CTT-e1558364855401.jpg
ORGANIZER;CN="Childhood Tumour Trust":MAILTO:info@childhoodtumourtrust.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190904T180000
DTEND;TZID=Europe/London:20190904T200000
DTSTAMP:20260406T003101
CREATED:20190816T124209Z
LAST-MODIFIED:20190816T124209Z
UID:5724-1567620000-1567627200@www.m4rd.org
SUMMARY:Everything You Wanted to Know about Genomics but Were Afraid to Ask
DESCRIPTION:The event is produced by the Progress Educational Trust (PET)\, in partnership with Health Education England and its Genomics Education Programme. \nIt will be co-chaired by Sarah Norcross and Dr Anneke Seller\, with speakers including Elizabeth Alexander\, Professor Jill Clayton-Smith\, Dr Simon Ramsden and Sabine Starr. \nIn the PET tradition\, much of this event’s running time will be devoted to letting the audience put questions and comments to the speakers. \nThe event is taking place during NHS England’s Health and Care Innovation Expo\, which is being held at a nearby venue. But attendance is open to everyone\, regardless of whether or not you are registered to attend the Expo.
URL:https://www.m4rd.org/event/everything-you-wanted-to-know-about-genomics-but-were-afraid-to-ask/
LOCATION:Manchester’s Science and Industry Museum\, Science and Industry Museum (Garratt Suite) Liverpool Road\, Manchester\, M3 4FP\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/08/genomics-e1565959314340.jpg
ORGANIZER;CN="Progress Educational Trust (PET)":MAILTO:admin@progress.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190808T184500
DTEND;TZID=Europe/London:20190808T210000
DTSTAMP:20260406T003101
CREATED:20190619T182057Z
LAST-MODIFIED:20190619T183518Z
UID:5238-1565289900-1565298000@www.m4rd.org
SUMMARY:The Cambridge Rare Disease Showcase
DESCRIPTION:Findacure’s  Rare Disease Showcases are a celebration of innovative rare disease projects across the UK. As a world leader in rare research\, exceptional examples of rare disease practice can be found all over the country. Their touring event series heads to local regions to give them the attention they deserve.\nAttendees can expect: \n\nQuick-fire lightning talks proposed and delivered by registered delegates\nHighlights of developments in the East of England\nOpportunities to build relationships with passionate and dedicated members from all sectors of the rare disease community\nChances to make connections with representatives of Cambridge Biomedical Campus and Cambridge University\nDelicious canapes and refreshments\n\nUpon registration\, all delegates will have the opportunity to propose a five-minute talk to be presented at the showcase. If you have a story to tell\, an innovative new idea or a project to share – now’s your chance! \nAttendance is free to patients patient groups and students\, £10 for academics and clinicians\, and £20 for industry.
URL:https://www.m4rd.org/event/the-cambridge-rare-disease-showcase/
LOCATION:Espresso Library\, 210 East Road\, Cambridge\, Cambridgeshire\, CB1 1BG\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/Cambridge-Rare-Disease-showcase-MG_5957-e1560968626243.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190710T133000
DTEND;TZID=Europe/London:20190710T170000
DTSTAMP:20260406T003101
CREATED:20190529T195130Z
LAST-MODIFIED:20190606T210007Z
UID:5054-1562765400-1562778000@www.m4rd.org
SUMMARY:BPSU Tea Party
DESCRIPTION:The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes\, hear young people speak about their experience of living with rare disease and visit informational stands.\nThe BPSU rare disease tea party will bring together stakeholders from across the rare disease community to hear young people and patient advocates speak about their experience of living with rare disease and working in the rare disease field. \nThis event is intended to be an informal networking opportunity with children and young people and carers\, healthcare professionals\, researchers and policy makers.
URL:https://www.m4rd.org/event/bpsu-tea-party/
LOCATION:Royal College of Paediatrics and Child Health\, 5-11 Theobalds Road\, London\, WC1X 8SH\, United Kingdom
CATEGORIES:Child and Young Person,Family Day,Networking,paediatric,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/unnamed-2-e1559854793637.jpg
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190627T160000
DTEND;TZID=Europe/London:20190627T180000
DTSTAMP:20260406T003101
CREATED:20190606T203321Z
LAST-MODIFIED:20190606T210444Z
UID:5160-1561651200-1561658400@www.m4rd.org
SUMMARY:Health Horizons: Future Healthcare Forum
DESCRIPTION:Over the previous 20 years\, we have seen a significant change in the healthcare industry. Small molecules have been pushed out of the blockbuster limelight by biologics. Decreasing sequencing cost has allowed more targeted R&D and the use of increasingly interdisciplinary data to influence prognosis has become standard practice. All of this points to a healthcare future with an increasingly personalized approach. But how will this future come together? \nRARE DISEASE: CROSS-SECTOR COLLABORATION AND DIVERGENT THINKING IN DEVELOPING THERAPIES. Are we on the cusp of a rare disease treatment revolution?\nDelegates will hear from a range of experts in this field\, each with a unique perspective on the future of healthcare\, treatments and cures for those affected by rare diseases. \nThis CRDN session brings together stakeholders from research\, industry\, healthcare and patient groups who are at the heart of innovative breakthroughs in therapies and technology to share their expertise in co-creating healthcare today\, and for the future. Hear a mix of inspirational and thought-provoking short talks and take part in a moderated discussion session.
URL:https://www.m4rd.org/event/health-horizons-future-healthcare-forum/
LOCATION:Corpus Christi College Lecture Theatre\, Trumpington Street\, Cambridge\, CB2 1RH\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/06/https-cdn.evbuc_.com-images-60472577-147790335965-1-original.20190416-130622.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190625T093000
DTEND;TZID=Europe/London:20190625T170000
DTSTAMP:20260406T003101
CREATED:20190429T190643Z
LAST-MODIFIED:20190615T150030Z
UID:4806-1561455000-1561482000@www.m4rd.org
SUMMARY:Managing complex neurological disorders in the community
DESCRIPTION:This conference will delve into some of the perceived mysteries and issues associated with ‘complex’ neurological conditions\, in an attempt to make them less ‘complex’\, and help you to address some of the unmet care needs of the people living complex neurological disorders.\nTopics include: \n\nEpilepsy\, Parkinson’s and Autism – what links them?\nMND: Hope from despair through multidisciplinary care\nManaging the challenges of Complex Epilepsy and Subsequent QoL impact\nUncovering a complex neurological disorder – key signs & symptoms indicating the need for a referral\nWhen is a neurological presentation not a neurological condition?\n\nFor more information and to book tickets
URL:https://www.m4rd.org/event/managing-complex-neurological-disorders-in-the-community/
LOCATION:Council House\, Birmingham\, Council House\, Victoria Square\, Birmingham\, B1 1BB\, United Kingdom
CATEGORIES:Conference,Neurology,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/04/PCNS.png
ORGANIZER;CN="Primary Care & Community Neurology Society":MAILTO:info@p-cns.corg.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190610T083000
DTEND;TZID=Europe/London:20190610T173000
DTSTAMP:20260406T003101
CREATED:20190403T170403Z
LAST-MODIFIED:20200123T142811Z
UID:4624-1560155400-1560187800@www.m4rd.org
SUMMARY:Epigenetics: The Emerging Key Player in Medicine
DESCRIPTION:Epigenetics is emerging as a key player in medicine. \nWell-known experts in the epigenetics world such as; Professor Wolf Reik\, Professor Stephan Beck\, Professor Sir Adrian Bird\, and Dr Nessa Carey will come together and give awe-inspiring talks across the epigenetics spectrum\, from its role in cancer to mental health\, the relevance to primary care and preventative medicine\, to rare diseases and what we can learn from these. \nWe will hear from those at the cutting edge of the epigenetics revolution and provide valuable insights into health\, disease and new treatments. \nEarly Bird pricing available until 19 April 2019 – RSM Students £25\n \nBOOK NOW \nMeeting topics\n\nUnderstanding epigenetics and the role of chemical modifications to DNA in shaping health and disease\nExploring our increasing appreciation of the impact of epigenetics upon a diverse range of biological processes and diseases\, from cancer to mental health\nRecognising the increasing importance of developing an understanding of epigenetics in clinical practice\nDiscussing the role of epigenetics in developmental programming and the bridge between nature and nurture
URL:https://www.m4rd.org/event/epigenetics-the-emerging-key-player-in-medicine/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Epigenetics,Lectures
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190524T093000
DTEND;TZID=Europe/London:20190524T160000
DTSTAMP:20260406T003101
CREATED:20190429T185458Z
LAST-MODIFIED:20190520T150646Z
UID:4798-1558690200-1558713600@www.m4rd.org
SUMMARY:PKU: A Heads Up
DESCRIPTION:Leading experts will explore the pathophysiology of PKU\, the impact of high phenylalanine levels on the brain of adult patients and the effect of PKU and aging.\nPhenylketonuria (PKU) is an inherited disorder that increases the levels of phenylalanine in the blood. Without treatment\, children develop permanent intellectual disabilities. Seizures\, delayed development\, behavioural problems and psychiatric disorders are also common. \nThis day will explore: \n\nPsychological disorders and mental health\nNeurological deterioration\nBone health\nPremature aging\nNutritional complications\n\nFor more information and to book tickets email keeley.crompton@srft.nhs.uk
URL:https://www.m4rd.org/event/pku-a-heads-up/
LOCATION:Salford Royal Hospitals NHS Foundation Trust\, Stott Lane\, Salford\, Manchester\, M6 8HD\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/04/PKU-e1558364786805.png
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190508T084500
DTEND;TZID=Europe/London:20190508T170000
DTSTAMP:20260406T003101
CREATED:20190320T133540Z
LAST-MODIFIED:20200122T091342Z
UID:4529-1557305100-1557334800@www.m4rd.org
SUMMARY:Rare diseases and the Kidney
DESCRIPTION:Hear expert nephrologists from clinical and academic fields present the latest updates and developments in a variety of rare disease areas.\nThe meeting will be of relevance to medical student\, trainees and consultants as it provides a unique opportunity to keep up to date with latest clinical developments\, opportunities and research being conducted\, plus MDT and patient partnerships for these conditions. \nRates start from only £20! \nMeeting topics: \n\nExpert overview of a number of rare diseases affecting the kidney\nBest medical management and potential treatments\nLatest research\, developments and opportunities for future research using the RADAR network\n\nFor more information and to book tickets\, visit the RSM Website.
URL:https://www.m4rd.org/event/rare-diseases-and-the-kidney/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Lectures,Nephrology,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/03/kidney_RSM.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190318T180000
DTEND;TZID=Europe/London:20190318T200000
DTSTAMP:20260406T003101
CREATED:20190304T153448Z
LAST-MODIFIED:20200123T043900Z
UID:4496-1552932000-1552939200@www.m4rd.org
SUMMARY:A Talk On Haemophilia
DESCRIPTION:KCL MedGenSoc presents: A Talk on Haemophilia\nWe are honoured to be hosting no less than two guest speakers for this event; \n\nKCH Haematology Consultant Dr Catherine Rea\, who specialises in clotting disorders\nYouTuber Luke Pembroke\, who himself suffers from Haemophilia\n\nRefreshments will be served before and after the talk. \nA sign up for a certificate of attendance will be available at the end of the lecture. \nAs always\, external staff and students are more than welcome to attend\, but purchase a free Eventbrite ticket at least 24 hours before the event \nThis talk is in association with Medics 4 Rare Diseases and sponsored by the MDU.
URL:https://www.m4rd.org/event/a-talk-on-haemophilia/
LOCATION:New Hunt’s House Library\, Guy's Campus\, London
CATEGORIES:Lectures
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190228
DTEND;VALUE=DATE:20190301
DTSTAMP:20260406T003101
CREATED:20190126T110741Z
LAST-MODIFIED:20200123T153111Z
UID:4219-1551312000-1551398399@www.m4rd.org
SUMMARY:Rare Disease Day 2019
DESCRIPTION:28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.\n\nMedics 4 Rare Diseases would love to know how you’re raising awareness on Rare Disease day. Tell us in the comments below or Tweet using @M4RareDiseases and #RareDiseaseDay.
URL:https://www.m4rd.org/event/rare-disease-day-2019-2/
CATEGORIES:Patient Information Day
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/01/Twitter-banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190220T123000
DTEND;TZID=UTC:20190220T180000
DTSTAMP:20260406T003101
CREATED:20181119T102224Z
LAST-MODIFIED:20200122T104848Z
UID:3387-1550665800-1550685600@www.m4rd.org
SUMMARY:The Unusual Suspects: Rare Diseases In Everyday Medical Care
DESCRIPTION:This is an RSM and Medics 4 Rare Diseases joint event where clinicians at all stages of their training\, will be informed about why rare diseases are important to everyday medicine.\nDelegates will get the opportunity to explore how generalists can approach patients with rare diseases\, and become advocates for them. Hear a real patient experience who has two rare diseases – one of which was diagnosed during an OSCE. And learn about the role genomics plays in everyday medicine. \nTopics include:\n\nHow rare diseases are relevant to every doctor’s career in medicine\nThe challenges shared by patients with rare diseases and explore how doctors can help them with these\nThe role of genomics in everyday medicine\nHow the work of Medics 4 Rare Diseases and the RSM Genetics Section play a role in rare disease education\n\n3 CPD Points awarded \nKey Speaker: Dr Ellen Thomas\, Clinical Lead for NHS Genomic Medicine at Genomics England \nView the full agenda \nRates\nRSM member: £15 \nNon member: £25 \nRegistration starts at 12.30 and the event begins at 1pm. \n\nPlease note: The RSM site is currently down for maintenance and reopens 10th February. Please use the form below to reserve your tickets. To book via the RSM site from 10th February\, click here.\nLoading…
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-diseases-in-everyday-medical-care/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2018/10/M4RD-Annual-Symposium.jpeg
END:VEVENT
END:VCALENDAR