Building NHS healthcare professional awareness resources
2024-01-26 14:00 - 15:30 (Europe/London) | ONLINE
Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important.
Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787
We would greatly value your participation and would very much appreciate if you could let us know by Friday 5th January if you accept this invitation.
If you have any questions, please do not hesitate to contact Nadine at nadine@m4rd.org

Beyond the Student Voice Prize
2024-03-13 19:00 - 20:30 | ONLINE
Join us to celebrate the end of another highly successful Student Voice Prize.
This year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success.
This event is an opportunity for us to share these achievements and showcase some inspiring case studies. We will also highlight opportunities for students to continue their involvement in rare diseases going forward.
We hope that for many students this competition has marked the beginning of a continued interest in rare diseases that could span their career and make a real difference to the lives of people living with rare conditions.

Who is this event for?

Medical and science students who have entered The Student Voice Prize in the past or would be interested to in the future
Medical and science students interested in learning more about rare conditions and getting involved in the community
Rare disease patient group leaders interested in SVP, even if you haven’t been involved in the past

During this event you will:

Hear stories from rare disease patients and advocates
Connect with students and the rare disease community
Hear from 2023 competition winners
Learn about opportunities to get involved with rare diseases going forward

Spaces are limited, don’t wait to claim your free ticket!

Misdiagnosis and surgical uncertainty - A patient's perspective
2024-09-25 19:30 - 21:00
Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman’s award-winning essay published in Springer Nature go to https://communities.springernature.com/posts/student-voice-prize-runner-up
This is the registration link for the event: https://us06web.zoom.us/webinar/register/WN_GNz8TK1lQN-wUqrXDtaXKQ#/registration

Rare Disease 101 for Rare Disease Day 2025!
2025-02-25 19:00 - 21:00 | ONLINE
Medics for Rare Disease: Rare Disease 101 for Rare Disease Day 2025!
Join us this Rare Disease Day for an engaging and impactful Rare Disease 101 online training session, reimagined with updated content and a fresh new look ✨.
Rare disease affects 350 million people worldwide, yet remains underrepresented in medical education. This session is designed to bridge that gap by approaching rare disease as a single discipline, highlighting the common challenges experienced by impacted people and discussing how to make a difference 💡.
Why attend?
🧠 Gain insights into the fundamentals of rare disease and learn how every healthcare professional can make a difference.
💬 Hear from the winner of the Student Voice Prize 2024 – more details to be revealed!
👂 Listen to powerful reflections from a lived-experience advocate, offering invaluable understanding of what it’s like to navigate the healthcare system with a rare condition.
This session is perfect for doctors, nurses, and other healthcare professionals, but it’s open to everyone worldwide, so don’t miss the opportunity to expand your knowledge and be part of the global conversation on rare disease. 🌍
➡️ Secure your spot today! The first 25 sign-ups will receive a NEW rebranded Medics for Rare Disease pin badge – perfect for showing others that you’re Rare Aware!
Medics for Rare Disease understands that some people may experience barriers to paid attendance. We have therefore reserved a number of FREE general admission tickets. Email helen@m4rd.org to receive the relevant promo code.
Find out more about Medics for Rare Disease at m4rd.org and take our free e-learning modules at learn.m4rd.org! 🎓

Genomics in Primary Care: What GPs need to know
2025-06-12 12:00 - 14:00 | ONLINE
Genomic medicine has a significant impact within the field of primary care. Generally acting as the gateway to the NHS and specialised services, primary care practitioners are crucial in the early identification of genetic conditions and in ensuring appropriate management of a range of conditions.
Genomics features in everyday primary care practice in a range of ways:
* Rare diseases are individually rare but collectively affect 1:17 families. GPs may have a caseload with a number of patients with the same rare disease within a family.
* Most care for patients with genetic conditions is provided in the community. A patient’s genetic condition might influence your choice of commonly prescribed medications such as HRT or contraceptives.
* Some common conditions have genetic susceptibility. Clinical Genetics only see the patients that GPs refer to them. As a GP you are in a unique position to suspect these diagnoses early and refer appropriately.
* Patients with inherited cancer predisposition syndromes need regular screening to find cancer early and improve prognosis. You can encourage them to attend for this.
* GPs can give preconception advice for families with known genetic conditions and encourage relatives to be tested to benefit from additional screening/treatment.
* Genes influence the way that our bodies process medication. As more research emerges, genetics is likely to influence our approach to prescribing in the future. This is already being seen in the prescription of clopidogrel to patients who have had a stroke.
In this informative webinar, we’ll hear from a range of experts – from patients through to healthcare professionals – to examine the application of genomics within primary care and how it relates to your role.
Register now to secure your place here, and don’t hesitate to get in touch if you have any questions.

Our Voices, Our Stories: Lived Experiences of Genomic Testing
2025-07-15 12:00 - 14:00 | ONLINE
Genomic testing is a complex clinical topic, with new developments and discoveries taking place at a rapid rate. Often, we focus predominantly on the clinical and scientific aspects of genomics, but it’s crucial to remember that each advancement has life-changing impacts on people across the world.
In this webinar, we’ll be exploring the lived experiences of people who have gone through genomic testing, research and diagnosis. Each of the participants you will hear from has a unique and impactful story, and will provide powerful insights into the human side of the genomic testing process. With experiences across cancer and rare disease, from parent carers through to those diagnosed as adults, we’ll be shining a light on the emotions involved in testing, diagnosis and treatment. Not only will you get to hear these compelling stories – you’ll also have the opportunity to ask questions and learn more about the importance of patient and public involvement in genomic testing and research.
The webinar will be co-chaired by two clinical experts in genomics – Dr Hannah Titheradge, Consultant Clinical Geneticist at Birmingham Women’s and Children’s Hospital (BWC), and Emma Douglas, Genetics Clinical Research Practitioner at BWC. Hannah has years of experience working in clinical genetics and is the Rare Disease Lead at BWC, whilst Emma is an expert in genetic research and is currently working towards her PhD on the patient experience of genomic testing.
This session is open to everyone, whether you’re a patient, healthcare professional, or an interested member of the public. If you’ve got lived experience yourself or any questions, you are welcome to share during the Q&A. For healthcare professionals, the session promises to provide you with a better understanding of the crucial patient perspective to better support those in your clinic.
If you have any queries about the event, please get in touch. If you’ve got any accessibility requirements, please let us know during the registration process.
And if you’re interested but aren’t able to attend on the date itself, make sure to still register and we will send you the recording after the event has taken place!
You can sign up here

Introduction to Delphi Studies
2025-07-16 15:00 - 16:00 | ONLINE
Have you ever heard of a Delphi Study and not quite sure what it entails? Or maybe you have never heard of Delphi? This webinar will be providing training on what a Delphi Study is and how they are run. PhD Candidate, Shams Al-Ani, studying Pharmaceutical medicine and regulatory affairs at Centre for Pharmaceutical Medicine Research, King’s College London will be delivering the training through a 45 minute presentation with time for Q+A session afterwards.
Sign up here

Ambassador Welcome Brew
2025-09-30 14:30 - 15:00, 2025-10-08 19:30 - 20:00 | ONLINE
A short, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme.
These informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!

Rare Disease Day 2026: Launch Webinar
2025-10-27 15:00 - 16:00 | ONLINE
Join one of two upcoming webinars on either the 27 or 28 October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates, patient organisations, industry supporters and all stakeholders in the rare disease community.

King's Health Partners Rare Disease Grand Round: Hepatobiliary disease
2025-11-03 13:00 - 14:00 | ONLINE
Join the upcoming Rare Disease Grand Round, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration, share insights, and advance rare disease research.
This session will focus on hepatobiliary disease, featuring expert talks on cutting-edge research:
Mind over MASLD: Unravelling brain dysfunction in steatotic liver disease – Dr Anna Hadjihambi, Group Lead, UKRI Future Leaders Fellow, King’s College London
Presentation by Prof Philip Newsome, Professor of Hepatology and Director of The Roger Williams Institute of Liver Studies – title to be announced
The event will be chaired by Dr Cristina Dias, Chair of the KHP Rare Disease Network, Clinical Reader in Genomics and Neurodevelopment at King’s College London, and Consultant in Clinical Genetics and Genomics at Guy’s and St Thomas’ NHS Foundation Trust.
Why attend? Connect with the King’s Health Partners research and clinical community, hear from leading experts, and explore the latest developments in rare disease research.
Recording available later on the KHP Learning Hub.

Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
2026-01-15 13:30 - 15:00 | ONLINE
Join Rare Diseases International for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.

Rarely Taught: Reflections on Rare Disease Training Globally
2026-02-11 19:30 - 20:30 | ONLINE
Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts.
As part of this interactive session, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course – giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026.
📅 Event Details
Date & Time: 11 February 2026, 19:30–20:30 GMT
Location: 💻 Online via Zoom
👉 Register via Eventbrite and receive the Zoom link shortly before the event
🌐 What to Expect
A concise, high-impact Rare Disease 101 teaching session
A shared conversation on learning needs, challenges and opportunities in rare disease medical training
Opportunities to connect with peers worldwide
🎟️ Who should attend?
Open to healthcare professionals and students globally. FREE to attend with optional £10 donation.
Whether you’re looking to expand your knowledge, gain a global perspective, or connect with like-minded colleagues, this event is the perfect way to kick-start your Rare Disease Day 2026 learning.
📌 Save the date and register now!
