Rare 101: Train the Trainer – Plan Your Own Rare Disease Session
2025-12-10 19:00 - 20:00 (Europe/London) | 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!

When to Suspect a Rare Disease in Any Practice Setting
2026-02-26 14:00 - 15:30 | LIVE STREAM
Join Medscape for a live educational session, ‘When to Suspect a Rare Disease in Any Practice Setting’, featuring our very own CEO Lucy McKay.
This live-streamed event will take place on February 26, 2026, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease may be at play across diverse clinical settings.
The event will be hosted live on Medscape’s social media platforms—no registration is required. Simply follow @Medscape to watch once the event goes live.

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 🔗 https://www.m4rd.org/rarediseaseday/
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 🔗 https://www.m4rd.org/rarediseaseday/
* 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

Rare Disease, NF1 and Primary Care: Research Workshop
2026-03-13 09:30 - 16:00 | Engine Rooms, Birchwood Park, Warrington, Cheshire, WA36 YNI
Building collaborations to advance rare disease research in primary care
Are you a primary care academic, clinician with an interest in rare diseases, rare-disease researcher, or an industry partner curious about the future of primary care research in rare conditions?
If so, this interactive research development workshop is for you.
This NW RDN NIHR-funded workshop will bring together stakeholders from across primary care, secondary care, academia, patient-focused research, and industry to explore how primary care can better support people living with rare diseases, using neurofibromatosis type 1 (NF1) as an exemplar condition.
The session will explore:
* the role of primary care in early recognition and diagnosis
* diagnostic pathways and longitudinal management
* coordination across services
* opportunities to use routinely collected data and digital health tools to strengthen care
By identifying key evidence gaps and priority research questions, the workshop aims to develop a collaborative, patient-centred research agenda grounded in everyday primary-care practice.
Join us to connect, set research priorities, and shape collaborative studies that improve outcomes for people living with rare diseases.

Swansea Rare Disease Study Day
2026-05-16 10:00 - 16:00 | Morriston Hospital Education Centre, Heol Maes Eglwys Treforys SA6 6NL
Medics for Rare Disease is proud to support the Swansea Rare Disease Study Day, hosted alongside Swansea University. This free event brings together clinical experts, patient speakers, and multiple charities and advocacy groups to share knowledge and experiences in the field of rare diseases.
The day will feature:
* Clinical and patient talks from a range of speakers
* Oral presentation and poster competitions for medical students and resident doctors, with monetary prizes and certificates – great for specialty training applications
* Free lunch provided for all attendees
* Attendance certificates
Competition Submission:
If you wish to take part in the oral presentation or poster competition, please submit an abstract here
Booking:
Attendance is free, but spaces are limited. Secure your spot via Eventbrite
.
Contact:
For queries, please email:
Oscar: 2307053@swansea.ac.uk
Dr James Ainsworth: james.ainsworth@wales.nhs.uk
Join us for a day of learning, networking, and celebrating the rare disease community!

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/
