Mobilising pathways to accommodate new transformative treatments - using CF as a case study
2021-05-13 17:00 - 18:00 (Europe/London) | ONLINE
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.
Learn 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.
Hopefully 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.
Panelists:
Tracey Daniels – Clinical Lead, York Teaching Hospital Foundation Trust
Ella Balasa – Patient Advocate and Health Engagement Consultant
Eleanor Thistleton – Parent and Medical Communications Expert, OPEN Health
Tom Smith – Patient Advocate and Life Science Public Engagement Expert
Panel Chair – Gavin Jones, Global Advisor, Rare Diseases, OPEN Health

Precision Medicine & Rare Disease
2021-06-10 15:00 - 21:00 | ONLINE
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.
Patients 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.
This conference will cover the following topics and more:

Experiences from all parties – patient journeys, doctors’ consultations, payer perspectives
Recruiting rare disease patients for clinical trials
Tools that allow online access for patients, doctors, data sets, multi-participant meetings
Challenges of treating rare disease patients and families during a pandemic
How 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

RCPH-BPSU series: Type 2 Diabetes in children and young people
2021-06-11 12:00 - 13:30 | ONLINE
There is growing evidence that the increase in childhood obesity has resulted in cases of Type 2 diabetes being diagnosed in younger age groups.
Although the incidence of Type 2 diabetes is increasing, the condition is still relatively rare in children, and therefore the symptoms and clinical presentation of it in children may not always be clear to paediatricians who have not encountered the disease in children before. This can cause late and misdiagnoses of the condition and this often causes additional emotional and financial burdens on the patients and their families.
In this webinar, Prof Julian Hamilton-Sheild and Prof Timothy Barrett will present the findings of the 2015-16 BPSU study.

Drug Repurposing for Rare Diseases 2021
2021-06-15 - 2021-06-16 | ONLINE
Findacure’s Drug Repurposing for Rare Diseases Conference is back for an eighth year, and this time, it’s gone virtual!
Naturally, 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?

EURORDIS Summer School
2021-06-21 - 2021-07-25 | ONLINE
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.
The EURORDIS Summer School training covers topics including: clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation.
The 2021 edition of the EURORDIS Summer School will take place on 21-25 June 2020, exceptionally online, due to the COVID-19 pandemic.
Ahead of the online training week, participants take part in 3 pre-training webinars and complete a selection of the online modules listed below.
Take part in free online training

Stuart Green Memorial Lecture 2021
2021-06-22 17:30 - 18:30 | ONLINE
Dr Stuart Green was a consultant at Birmingham Children’s Hospital who set up the Paediatric Neurology department. He was known internationallly for his expertise and was loved and respected by patients and colleagues alike for his kindness, wit and wisdom.
This public lecture set up in his memory takes place at Birmingham Children’s Hospital, every year in June and is appropriate also for a non-specialist audience.
The 2021 lecture will be held as a virtual event on Tuesday 22nd June 5.30-6.30pm. Young author and former BCH patient Sarah Lippett will talk about her experience of growing up with a rare disease as illustrated in her award-winning graphic novel “A puff of smoke” http://www.crayonlegs.com/portfolio/a-puff-of-smoke/.
You can find out more about the Stuart Green Memorial Fund at https://bwc.nhs.uk/stuart-green-memorial-lectures-and-bursary/

Diverse Discoveries and Inclusive Insights Conference
2021-06-30 09:30 - 15:30 | ONLINE
Come together with like minded professionals who have a passion to ensure no one is left behind.

Hear 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.

Breaking 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.

Top Topics:

Health inequalities the challenges and solutions
The impact of doing nothing
Developments in Genetics and pre-implantation diagnosis
The power of language

You can register for this innovative event by following the link below:
https://attendee.gotowebinar.com/register/7018232613206242062

Public Dialogue on Whole Genome Sequencing for Newborn Screening
2021-07-08 10:00 - 12:00 | ONLINE
An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening.

One hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn screening. The dialogue was commissioned by Genomics England and the UK National Screening Committee, co-funded and supported by UKRI’s Sciencewise programme. Come and hear what the dialogue has told us about the attitudes, aspirations and concerns of the public about genomics and newborn screening. What are the values and principles that inform these views? How do we trade off potential harms with potential benefits for the child, the parents, the wider family, the NHS and society more broadly? What might a newborn screening programme using genomics look like? What safeguards and information are needed?

The genetics of primary care
2021-07-26 17:30 - 18:30 | ONLINE
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.
Frequent 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.
During this webinar you will:

Provide delegates with clinical and digital tools needed to assess a patients risk of developing certain cancers based on their family history
Recognise the pattern of presentation to primary care that could indicate a patient has a rare disease
Equip attendees with the steps to follow when presented with results of patient-organised DNA genetic tests

The 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.

Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
2021-09-18 | ONLINE
Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.
The 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021.
On Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers.
Both events are open to the Global WS community, doctors, researchers and others interested in Wolfram Syndrome or rare diseases.
Click here to view the full programme and how to register for individual webinar presentations.

Findings from the NCARDRS rare disease collection discovery phase
2021-09-23 12:00 - 13:00 | ONLINE
This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS

As part of the National Disease Registration service (NDRS) webinar series, this webinar will cover:

NCARDRS supporting specialised services
The impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England
Understanding histiocytic disease – describing the largest population based cohort

Speakers:
Dr Mark Bishton, Consultant Haematologist, Nottingham University Hospitals NHS Trust, Honorary Clinical Associate Professor, University of Nottingham, School of Medicine
Dr Peter Stilwell, Higher Rare Disease and Cancer Analyst, NDRS
Dr Hanhua Liu, Senior Cancer Intelligence Analyst, NDRS

Although 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.
The 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.
If you have any questions about this webinar or registering to attend, please contact NDRSengagement@phe.gov.uk.

Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2)
2021-09-25 | ONLINE

RAREsummit21
2021-10-07 08:00 - 17:00 | ONLINE
Hear from and engage with a range of stakeholders pioneering change across the rare disease landscape…

CRDN‘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.
7th 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.
It’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.
The aim of RAREsummit21 is:

to raise awareness of rare conditions and their impact
to showcase exemplars of impactful patient group collaboration with other stakeholders
to bring all stakeholders in rare diseases together to drive patient group, researcher and industry partnering opportunities
to give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners
to improve the lives of rare disease patients, together, with greater efficiency, collaboration and success

NORD Breakthrough Summit
2021-10-18 - 2021-10-19 | ONLINE
NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme.
The summit will discuss the latest updates on:

rare disease diagnosis and research
genetics and genomics
drug development and patient engagement
FDA oversight

A limited number of free passes may be available to patient advocates, students and patients. Click here to apply.

Learning together: The importance of patient partnership
2021-10-20 14:00 - 16:30 | ONLINE
Join the RSM to reflect on the principles of patient partnership and patient care in this afternoon prize meeting.
Dr Bola Owolabi, Director – Health Inequalities NHS England and NHS Improvement, will deliver the keynote lecture, exploring the importance of patient partnership in the training of our future doctors. Medical students will have the opportunity to deliver a presentation on their reflections of the impact of the pandemic on themselves, other healthcare professionals and patients.

Rare disease education: insights on what clinicians know, want and need
2021-11-01 12:00 - 12:45 | ONLINE
SAVE THE DATE
An 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.
Dr 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!

Genomic ophthalmology: Diagnostics and therapeutics
2021-11-11 18:00 - 19:45 | ONLINE
This webinar will provide insights and updates on ophthalmic genetics to ophthalmologists. Specialist speakers will educate delegates on how to order genetic testing, how whole genome sequencing will improve patient care, and will discuss the genetic therapies in development including limitations and new technology.
CPD accredited.
Free for RSM members.

Vasculitis: From cell to service
2021-11-17 - 2021-11-18 | Webinar
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.
This webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS.
All specialities interested in the management of vasculitis are invited to attend in both paediatric and adult medicine.
This webinar will:

Describe UKIVAS registry activity with an outline of data linkage projects
Examine recent service development, quality improvement initiatives and multi-professional communication networks
Provide updates on bioresource, basic science and clinical research
Outline advances in COVID-19 management and the impact of the pandemic on patients with vasculitis
Learn of newer therapies, steroid minimisation approaches and trial pathways across a broad range of the vasculitides
Highlight advances in paediatric vasculitis and communication

CPD learning applied.

Artificial intelligence in genomic medicine
2021-11-24 12:00 - 16:45 | ONLINE
Join world-renowned experts as they lead exciting discussions exploring the intersection between Artificial Intelligence and Genomic Medicine. Experts leading the panel discussions include Chris Wigley, CEO of Genomics England, Professor Pearse Keane, Professor of Artificial Intelligence Medicine at UCL, Dr Stephen Kingsmore, President and CEO of Rady Children’s Institute for Genomic Medicine, and Professor Mihaela van der Schaar,Professor of Machine Learning, Artificial Intelligence and Medicine at the University of Cambridge.
CPD accredited.
Free for RSM members.

The genetics of consanguinity and inherited risk
2021-11-29 17:30 - 18:30 | ONLINE
This webinar aims to explore the issues and management of risks related to endogamy and consanguinity and will highlight new advances in pre-natal screening protocols. Consanguineous marriage is still practiced by over 30% of the world’s population and in some areas, the prevalence is as high as 60%. Advances in next-generation gene sequencing have led to a better understanding of pre-emptive carrier risk assessments and adult-onset disease risks.
CPD accredited.
Free for RSM members.

Diagnosis and Management of Rare Diseases
2021-12-08 19:00 - 20:30 | ONLINE
This FREE live 90-minute webinar will focus on the diagnosis and management of rare diseases, in particular haematological conditions.
The fundamentals of a rare disease – what is it? Who is affected? What’s impact and challenges when a condition is rare? What do rare conditions have in common? How can clinicians seek help, advice and alleviate some of the burden of rarity. The webinar will focus on both generic issues relevant to patients and clinicians and also a detailed look at some example haematological conditions. The webinar will include practical examples and case based discussions.
Learning Outcomes:

Appreciate that rare conditions can impact patients in similar ways
How to approach potential rare diseases from a primary care viewpoint
Relevance of rare diseases to your clinical practice, how you might recognise them and when to ask for advice/refer
Specific haematological learning for example in sickle cell disease and haemophilia
Identify resources that can support you and your patient

There will be plenty of time in this webinar for Q&A.
Speakers will include:
Dr Lucy McKay, CEO of Medics4RareDiseases
Dr William Evans, Chairman NPUK
Mrs Karen Harrison, Alex The Leukodystrophy Charity

Maximising engagement with healthcare professionals
2021-12-14 11:00 - 12:30
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.
Most 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.
This 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.

This webinar will:

Explore the different levels on which patient organisations can base their engagement with medical professionals
Cover the practical things patients can do (no matter what size or capacity) to engage efficiently and sustainably with HCPs
Highlight case studies from across the rare space of what different patient groups are doing

Please note: This is the first in a series of two webinars which will explore engagement with HCPs.

Lessons learned from the COVID-19 pandemic: Diagnostic delay in rare disease
2022-02-01 18:30 - 20:00 | ONLINE
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.
To 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.
Jointly organised with ARDEnt, this webinar will examine how the diagnostic process in rare diseases was affected by the response to the COVID-19 pandemic.
The 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.
Read 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.
CPD learning applied.
This 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.
This 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.

Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination
2022-02-08 18:30 - 20:00 | ONLINE
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.
Jointly 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.
As the world begins to find its new normal we must ensure we are “making the unseen seen”.
Read 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.
CPD learning applied.
This 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.
This 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.

The Unusual Suspects: rare disease in everyday medicine
2022-02-09 18:00 - 20:00 | LIVE STREAM
The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February!
The 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.
Following the success of last year’s online event, we will be live streaming from 1 Wimpole Street.
This 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.
BOOK NOW

Lessons learned from the COVID-19 pandemic: Clinical trials and drug development in rare disease
2022-02-15 18:00 - 20:30 | ONLINE
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.
Read 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.
CPD learning applied.
This 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.
This 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.

Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
2022-02-22 18:00 - 20:30 | ONLINE
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.
The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.
Read 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.
CPD learning applied.
This 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.
This 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.

Beyond the Student Voice Prize: Continuing your involvement in rare disease
2022-02-28 18:30 - 20:00 | ONLINE
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

The 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.
The 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.
Who is this event for?

Previous entrants of the Student Voice Prize
Medical students interested in learning more about rare conditions and getting involved in the community
Rare disease patient group leaders who have been involved in the Student Voice Prize in the past
Rare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!

Why should you attend?

Rare 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.
Rare 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.

The 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.

Online workshop: Understanding access and reimbursement
2022-05-17 - 2022-05-19 | ONLINE
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.
However, 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.
This 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.
Day one: Access and reimbursement 101, back to basics
Day two: Understanding the NICE appraisal process
Day three: where can patient groups get involved?

Understanding Rare Disease: Communicating with Patients
2022-06-08 14:00 - 15:30
Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event!
About this event
The 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.
What will you get from attending this event?
• Gain experience from communicating directly with those affected by rare disease
• Improve your understanding of rare disease and how to react when faced with a potential rare disease
• Develop your communication skills (notability how to share sensitive information and break bad news)
• Gain a certificate of attendance to exhibit your enhanced learning
We 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…
All medical students are welcome to attend the event!
Please note this event may be beneficial for students preparing for upcoming OSCE examinations.
We look forward to seeing you there and learning together!
This event is initiated and funded by Takeda UK, run together with Medics4RareDisease.
