Medics For Rare Disease

Ambassador Welcome Brew
2025-10-08 19:30 - 20:00 (Europe/London) | 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.

RAREsummit25: CamRARE at 10 – Connecting Moments
2025-11-06 09:00 - 17:00 | Wellcome Genome Campus Conference Centre
2025 marks a special milestone — CamRARE’s 10th anniversary. A decade of progress. A future of possibilities. Over the past decade, we have championed collaboration, amplified patient voices, and driven progress in rare disease research, policy, and innovation. Through inspiring keynotes, dynamic discussions and workshops, and interactive networking opportunities, we will reflect on the past 10 years of impact while shaping the future of rare disease collaboration.
Who will you connect with at RAREsummit25?
Being connected is critical in rare diseases and RAREsummit25 brings the right people together – thought leaders, researchers, healthcare professionals, industry pioneers, policy-makers and —most importantly—individuals living with rare conditions and the organisations that support and advocate for them.
You can book tickets for the event here

EDIRA 'Let’s COCO: Celebrating the Doers
2025-11-07 12:30 - 17:30 | Edgbaston Park Hotel
A Hybrid event celebrating DOERS who showcase their Collaboration – Outreach – Co-creation projects with impactful Outcomes.
This is your chance to be part of a dynamic, hybrid gathering.

Genomics in Men's Health: Harnessing the Genome
2025-11-14 12:00 - 14:00 | ONLINE
Join Central and South Genomics this Men’s Health Awareness Month for a free webinar exploring how genomics and men’s health are connected.
From fertility to oncology, our speakers will discuss how genetics influence wellbeing, risk, and treatment options. You’ll hear insights on:
* X-linked conditions
* Lynch Syndrome
* Prostate cancer
* Male infertility
* The patient experience
Whether you’re a healthcare professional or simply curious about how genomics shapes men’s health, this session offers valuable, accessible insight into the power of personalised medicine.

Your Rare Event Toolkit: Plan, Run, Inspire
2025-11-19 19:00 - 20:00 | ONLINE
Thinking of running a Rare Disease event in 2026? Whether it’s a seminar, study day, or conference — this session is for you.
Join Medics for Rare Diseases and our panel of Ambassadors who successfully organised Rare Disease events last year. Learn the ropes, get inspired, and discover how to make your event a success!
What to expect
💡 Resources and guidance – Find out what support and materials are available to help you plan and deliver your event.
🧭 Top tips from experience – Hear from Ambassadors who’ve been there and done it, and learn what worked for them.
💬 Q&A session – Bring your questions and ideas to our Ambassador panel.
Who should attend?
Medics for Rare Diseases Ambassadors: medical students, trainees, and healthcare professionals interested in running a Rare Event or patient advocates looking to raise awareness of rare conditions in their community or institution.
Why attend
You’ll leave with practical advice, ready-to-use resources, and the confidence to host your own Rare Event in 2026 — helping your peers and colleagues to become Rare Aware 💜

Brew & Banter: Alumni Edition
2025-11-27 15:00 - 15:30 | ONLINE
Join our Medics for Rare Disease alumni online meetup: Brew & Banter Edition! ☕💬
Reconnect with fellow alumni in this relaxed virtual catch-up. Hear updates from our current ambassadors, share your experiences, and explore ways to support and mentor the next generation of Medics for Rare Disease ambassadors.
We’d love your input on the format and topics that would be most inspiring or useful to discuss. Come ready to share, listen, and connect over a friendly virtual brew!

Rare 101: Train the Trainer – Plan Your Own Rare Disease Session
2025-12-10 19:00 - 20:00 | ONLINE
Learn how to deliver engaging Rare Disease 101 talks with tips, resources, and insights from experienced ambassadors.
Thinking of running a Rare 101 training session in 2026? Whether you’re planning a full session or just have 10 minutes to introduce the basics, this online training is designed to help you succeed.
Join our ambassadors—who have run successful sessions before—for an engaging and practical online workshop. Discover how to plan your own Rare 101 talk, get inspired by real examples, and access the resources you need to deliver a meaningful session.
What to Expect:
Practical Resources: Get tools and materials to help you plan and deliver your Rare 101 talk.
Expert Insights: Learn the fundamentals of rare disease and understand how every healthcare professional can make a difference.
Tips & Tricks: Hear from ambassadors who have delivered sessions successfully.
Interactive Q&A: Ask your questions and get advice from Helen, our experienced trainer.
Sign up today to secure your spot and start planning your impactful Rare 101 session!

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.

Medics for Rare Disease Ambassador & Alumni Brew
2026-01-22 15:00 - 15:30 | ONLINE
Kick off the New Year with a cuppa and a catch-up at our New Year Ambassador Brew ☕
This relaxed, virtual get-together is a chance for our Ambassador community to reconnect, welcome new faces, and ease into the year ahead together. There’s no formal agenda – just good conversation, shared experiences, and space to reflect on what’s coming up in 2026 for Medics for Rare Disease.
We’ll:
* Say hello (or welcome back!)
* Share a few informal updates from the team
* Chat about what’s ahead for ambassadors this year
* Create space for questions, ideas, and connection
Whether you’ve been an ambassador/alumni for years or you’re relatively newly involved, this is a low-pressure, friendly space to join with a brew of your choice and be part of the conversation.
👉 Grab a drink, bring yourself, and start the year with community.

Medics for Rare Disease Ambassador Rare 101: Train the Trainer
2026-01-27 19:00 - 20:00 | ONLINE
Learn how to deliver engaging Rare Disease 101 talks with tips, resources, and insights from experienced ambassadors.
Thinking of running a Rare 101 training session in 2026? Whether you’re planning a full session or just have 10 minutes to introduce the basics, this online training is designed to help you succeed.
Join our ambassadors—who have run successful sessions before—for an engaging and practical online workshop. Discover how to plan your own Rare 101 talk, get inspired by real examples, and access the resources you need to deliver a meaningful session.
What to Expect:
* Practical Resources: Get tools and materials to help you plan and deliver your Rare 101 talk.
* Expert Insights: Learn the fundamentals of rare disease and understand how every healthcare professional can make a difference.
* Tips & Tricks: Hear from ambassadors who have delivered sessions successfully.
* Interactive Q&A: Ask your questions and get advice from Helen, our experienced trainer.

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!

More Than You Can Imagine: Genomics and Rare Disease
2026-02-27 12:00 - 14:00 | ONLINE
Join Central and South Genomics for an insightful webinar in recognition of Rare Disease Day, where they will bring together patients, healthcare professionals, and researchers to explore the latest in patient advocacy, genomics and rare disease. This event is for everyone, whether you’re from a healthcare background, have been affected by a rare disease, or are just keen to learn more.
This session will cover key topics, including:
* Understanding rare diseases and genomics – How advances in genetics are shaping diagnosis and treatment.
* History of rare disease – How rare disease diagnosis has changed through time.
* Patient experiences – Real-life stories that highlight the journey from diagnosis to treatment.
* Support networks & advocacy – Connecting patients with resources for ongoing care.
You’ll hear from a range of experts, from clinicians to charity representatives and patient advocates.
If you have any queries, please contact Vicki.Geddes@uhb.nhs.uk

Rare Disease Day 2026: #ShowYourStripes & #LearnYourStripes
2026-02-28
Rare Disease Day 2026 is your chance to stand with the 3.5 million people in the UK living with a rare disease, and to take one small action that can make a big difference.
Since 2022, Medics for Rare Disease has invited healthcare professionals (HCPs), medical students and supporters to #ShowYourStripes by wearing stripy socks to spark conversations, raise awareness and show solidarity with the rare community.
In 2026, we’re going one step further.
Alongside dusting off your stripey socks, we’re launching #LearnYourStripes, a major push to deepen understanding of rare diseases across healthcare and beyond. This year, we’re asking HCPs not only to show their support, but to build their rare disease knowledge by completing our 5‑minute Rare Disease training video. (Watch this space for more details!)
Why this matters
While there are thousands of individual rare diseases, people affected by them face strikingly similar challenges.
* 3.5 million people in the UK are living with a rare disease, as many as those living with cancer
* Patients wait an average of 5 years for a diagnosis, often being passed between specialists and undergoing unnecessary tests
* Despite this, there is no standardised rare disease education in UK medical school curricula or specialty training
* In a 2023 Medics for Rare Disease study, 73% of medical students surveyed could not correctly define a rare disease
Greater rare awareness in healthcare can shorten diagnostic journeys, reduce patient harm and improve experiences for people living with rare conditions.
How to get involved
In the week running up to Rare Disease Day (Saturday 28 February 2026), we’re inviting healthcare professionals and supporters to:
1. #ShowYourStripes
* Wear a pair of stripey socks at work or at home
* Share a photo on social media using #ShowYourStripes
* Tag @MedicsForRare to help spread the message
2. #LearnYourStripes
* Complete our 5‑minute Rare Disease training video at: https://www.m4rd.org/
* Encourage colleagues, teams and students to do the same
* For enquiries about in‑person training, email: hello@m4rd.org

Demystifying the connection between patients and researchers
2026-03-06 12:00 - 17:00 | Kings College London, Great Hall, King’s College London – Strand Campus, London, London, WC2R 2LS, United Kingdom
Co-hosted by Medics for Rare Disease and King’s Health Partners Rare Disease Network
📅 Date: Friday 6 March 2026
⏰ Time: 12:00 – 16:45
📍 Location: Great Hall, King’s College London – Strand Campus, WC2R 2LS (In-person event)
About the event
Medics for Rare Disease is pleased to be co-hosting a half-day, in-person event with the King’s Health Partners Rare Disease Network.
Join us for a half‑day event exploring how patients, researchers, clinicians and industry partners can work together to drive inclusive, impactful rare disease research.
Hear real stories, take part in discussions, and connect with others working to build equitable research partnerships.
Programme highlights
* Presentations
* High tea reception with poster displays (more details about Call For Abstracts coming soon)
* Expert panel discussions.
Who should attend
This event will be of interest to:
Patients and patient advocates
* Researchers and clinicians
* Industry partners
* Policy makers and research funders
* Anyone interested in inclusive, collaborative rare disease research
Registration
Buy your tickets here

European Conference on Rare Diseases & Orphan Products (ECRD 2026)
2026-06-02 - 2026-06-04 | O2 universum Congress Centre, Českomoravská 2345/17, Libeň, Prague, 19000, Czech Republic
🗓 Date: 2–4 June 2026
📍 Location: Prague & Online
🔗 Register: Sign up here
Join EURORDIS‑Rare Diseases Europe for the largest patient‑led rare disease policy event in Europe! Over three days, patients, advocates, clinicians, researchers, and policymakers will come together to discuss therapy access, diagnosis, care, innovation, and more.
We’re proud to support EURORDIS in sharing this opportunity and encouraging participation across our networks.
➡️ Register now: https://www.rare-diseases.eu/register/
