Medics For Rare Disease

Beyond the Student Voice Prize
2024-03-13 19:00 - 20:30 (Europe/London) | 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!

Galactic Genomes: Exploring the Universe of Rare Diseases
2024-05-04 09:30 - 16:00 | Cambridge University
“May the fourth be with you!” Cambridge University Rare Disease Society and Cambridge University Genomic Medicine Society are co-hosting a stellar event in Cambridge on Saturday 4 May.
The day will feature talks from leading researchers, rare disease patient voices and representation from more than 15 rare disease organisations, as well as presentations from a research poster competition. Tea, coffee and lunch will be provided.
The event is free to attend with a £5 deposit, which will be reimbursed on the day with the completion of a feedback form.
For full details of the day and to book your place, please visit the event page.

ECRD 2024
2024-05-15 08:00 - 2024-05-16 17:00 | The Square Venue, Brussels
The 12th European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest, patient-led, rare disease policy-shaping event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.
Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1000 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare
professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.
With the European elections approaching, at the inception of a new term for the European Parliament and the European Commission, the 12th ECRD becomes a key driver in shaping policies to address the unique needs of people with rare diseases and their families over the next
five years.
The ECRD’s value is underscored by its alignment with EURORDIS’ priorities for the EU elections, evident in its comprehensive six-session agenda.
What sets the ECRD apart is its integration into broader rare disease policy and healthcare ecosystem efforts. Rooted in the recommendations of the Rare 2030 Foresight Study, the ECRD continues to build on this comprehensive review of the strategy for rare diseases and shape the thinking of policymakers and the community, encouraging a more streamlined and proactive approach to addressing the unmet needs of people living with rare diseases and the persisting inequalities across Europe.
Save the Date: 15 – 16 May 2024, online and at The Square venue in Brussels

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 Fest 2024
2024-11-22 08:00 - 2024-11-23 17:00
RAREfest24
A festival as unique as you are. For curious minds of all ages, for FREE.
Fri 22 November – Launch Evening ‘Strictly Rare’
An evening of music, performance, comedy, talks and innovative research inspired art to challenge perceptions, dispel myths and imagine the possible.
Sat 23 November – Interactive Exhibition
Immerse yourself in a bustling marketplace of hands-on exhibits, interactive talks, films, and stunning research-inspired art. Discover the latest in innovative science and technology and meet leading researchers, tech start-ups, treatment pioneers and individuals with rare conditions. Educational fun for the whole family.

Haematology
2024-11-22 11:00 - 12:30
Alongside the British Society for Haematology this session will discuss management of sickle cell disease and the appropriate use of blood components. It will also explore diagnostic work up for suspected haematological malignancy and investigate thrombocytopenia.

Connecting the Dots: Oxford University Student Rare Disease Conference 2025
2025-02-23 09:30 - 17:00 | Magdalen College, University of Oxford
The Oxford Rare Disease Society (OxRare) and the Sherrington Society are excited to welcome you to “Connecting the Dots” – our first Oxford University Student Rare Disease Conference, taking place Sunday 23rd February, 9:30–17:00 at Magdalen College, Oxford. We’re supported by Medics for Rare Disease and our kind sponsors.
Join us for this exciting opportunity to hear from expert speakers at the frontiers of genomics and medical research, amplify Rare Disease patient voices, forge new collaborations, and learn how we can make a positive difference as the doctors and science professionals of tomorrow.
Call for posters! Students and early career researchers are invited to submit a poster presentation, with chance to win prizes! Submit your abstracts here: https://forms.gle/D7VBjtYKbQagQmk97
In-person ticket includes FREE tea, coffee, delicious lunch and networking drinks. We just ask that you complete the feedback form to receive your Certificate of Attendance and part-reimbursement of the ticket cost. The event is FREE to attend for individuals with lived experience of rare disease.
NB: Livestream tickets are intended for those joining virtually from outside of Oxford. Those in Oxford are highly encouraged to attend in person to enjoy free refreshments and the opportunity to speak to Rare Disease patient representatives.
Any questions you can email Linda/Kevin at oxfordrarediseasesoc@gmail.com or Cat/Jake at magdsherringtonsociety@gmail.com.
Getting here:
The closest entry to the Grove Auditorium is through the entrance on Longwall Street (step-free access). Alternatively, if you enter via the Porters’ Lodge on the main High Street (non step-free), they can help to direct you to the Auditorium.
By Public Transport: From Oxford Railway Station, Magdalen College is ~20 min walk, ~20 min by bus, and 10 min by taxi. The nearest bus stop for the college is High Street (2 min walk), served by buses from the Railway station and by the Oxford Tube.
By Car: You may wish to use one of the Park & Rides. The fare includes parking for 16 hours and bus travel into Oxford City Centre https://www.oxford.gov.uk/park-ride

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! 🎓

#ShowYourStripes for Rare Disease Day 2025
2025-02-28 | ONLINE
Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is asking clinicians, allied healthcare professionals and healthcare students to join forces, to help drive rare disease awareness in the run up to the big day!
Stripey socks and selfies
Getting involved is easy. Just wear some stripey socks and post a selfie on Instagram or LinkedIn with the hashtag #ShowYourStripes and tag @MedicsForRare. All tagged photos will be uploaded to an online gallery that will remain a visual show of support to those people living with rare conditions. Not on social media? No problem, just email your pictures to hello@m4rd.org.
Show off those stripes all week!
Friday 28th is Rare Disease Day but we encourage you to show your stripes on whatever shifts you may be working that week, from Monday 24th February! Team pictures and creative selfies are welcome and there will be awards for the most impressive images. For inspiration, check out last year’s gallery here.
Awareness is Key
Rare diseases are individually rare but collectively common, affecting 3.5 million people in the UK. Patients with rare disease face similar challenges, waiting an average of 5 years to reach diagnosis. Raising healthcare professional awareness about rare disease is key to a timely diagnosis and better outcomes.
Why the stripes?
The zebra was adopted as a symbol of the rare disease community. This is thanks to the now archaic medical adage ‘when you hear hooves, think horse not zebra’, that still impacts clinical decision-making today.
Show your support, #ShowYourStripes!

More Than You Can Imagine: Genomics and Rare Disease
2025-02-28 12:00 - 14:30 | ONLINE
Join Central and South Genomics for an insightful webinar in recognition of Rare Disease Day, where we 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.
Equity & diversity in research – Addressing challenges in representation and access to care.
Patient experiences – Real-life stories that highlight the journey from diagnosis to treatment.
Newborn research & pharmacogenomics – The future of personalised medicine.
Support networks & advocacy – Connecting patients with resources for ongoing care.
We’ll hear from a range of experts, from clinicians to charity representatives and patient advocates. To view the full agenda, please click here.
If you have any queries, please don’t hesitate to get in touch. We look forward to seeing you on 28 February.

Spotlight on the Unseen
2025-02-28 16:00 - 18:00 | University of Liverpool
Join us on Friday, 28th February, from 16:00–18:00 at Formby Room, Cedar House, University of Liverpool.
This seminar is an exciting opportunity to learn from an expert speaker, hear powerful patient stories, and explore the crucial role of rare disease awareness in medical education. Refreshments will be provided!
Programme Highlights
Rare 101 – An introduction to rare disease
“Sickle Cell stopped me from studying medicine” – Experience shared by Alicia
“Living with Chiari Malformation & Syringomyelia” – Insights from Charlotte
Why Attend?
Enhance your clinical knowledge and become Rare Aware! Rare diseases are individually rare but collectively common and share common challenges. Learn about the common themes in the patient experience and how to best support people before, during and after diagnosis.
Learn directly from lived experience advocates and connect with Rare Aware peers – Network with others who are passionate about improving rare disease education and care.
Nab some free Medics for Rare Socks – don’t forget to share a picture on social media and tag @MedicsForRare
Receive a certificate of attendance – just complete our short feedback survey!
Getting here:
The Formby Room, Cedar House is located within the University of Liverpool’s medical school on Ashton St, Liverpool L69 3GE. The room is on the ground floor, ensuring easy access for all attendees.
By Public Transport: Cedar House is easily accessible via Liverpool Lime Street Station (~15 min walk) and by various bus routes.
By Car: Limited parking is available on campus, and nearby public parking options can be found.
For any questions, feel free to reach out to Himani hlhsehgal@liverpool.ac.uk or Princess hlpbello@liverpool.ac.uk
#DareToThinkRare #ShowYourStripes @MedicsForRare

Swansea Rare Disease Study Day
2025-03-08 10:00 - 18:30 | Morriston Hospital Education Centre, Heol Maes Eglwys Treforys SA6 6NL
Dive deep into the world of rare diseases at the first Swansea Rare Disease Study Day on 8th March 2025!
Why attend?
Gain invaluable insights from our expert guest speakers.
Learn from our engaging panel discussions.
Meet a range of local patient advocacy groups to discover more about the lived reality of those impacted by rare conditions.
Network with others rare disease allies.
Enjoy a tasty lunch from Sue Franks catering.
Call for oral and poster presentations
Medical students and foundation doctors are invited to submit abstracts for oral presentations, and medical students and resident doctors of all grades for poster presentations. Cash prizes are up for grabs! Find out more and submit your abstract here https://forms.gle/pFhybxbJo1XbPU5U9 by 31st January 2025.
Don’t miss this opportunity to expand your horizons and become #RareAware!

Soft UK Healthcare Professionals Seminar
2025-05-16 14:00 - 16:00 | Holiday Inn, Birmingham
SOFT UK invites healthcare professionals to a transformative seminar focused on the power of language in supporting families navigating rare genetic diagnoses and ongoing care. This event offers a unique blend of expert insights and heartfelt personal stories, equipping attendees with practical tools to foster meaningful and compassionate dialogue.
By attending, you will:
Develop your understanding of the impact of language upon parents and families facing diagnosis of rare genetic and life limiting conditions
Engage in face-to-face networking with trisomy family members, gaining first hand perspectives
Discover actionable strategies through real-life narratives to enhance communication during diagnosis and throughout ongoing care
At the end of the event we invite you to join us at a Rewards and Recognition dinner, where you can learn more about the work of SOFT UK and those who support us.

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.

Recommendation Writing Workshop
2025-06-23 09:30 - 16:00 | Edgbaston Park Hotel
Monday 23rd June 9.30 – 4pm at Edgbaston Park Hotel. LIMITED PLACES – reserve your spot now!
Welcome to the IAG2 Face to Face Meeting!
Medics for Rare Disease has a vision of healthcare equity for everyone. We have been working with the Department of Health and Social Care since 2018 in order to achieve our mission.
On 23rd June we are hosting a workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’.
We will be asking…
What is healthcare professional awareness?
How do we implement it throughout the NHS?
How do we measure it?
If you have practical ideas and suggestions that could inform these recommendations, WE WANT YOU to join us on the day.
Who do we want to attend:
People who have practical ideas
People who have experience of driving system change
People who have experience developing services in the NHS
People with experience designing and implementing e.g. Dementia Friendly Hospitals
Healthcare professionals, people who work in the NHS and advocates alike!
This project (‘IAG2’) is being run by Medics for Rare Disease and Emotive with support from collaborators on the UK Rare Diseases Framework Forum and has been approved by The Department of Health and Social Care.
Keep in mind:
We are not responsible for implementing the recommendations
This will not be a forum for exploring single individual’s experiences
This will not be a forum for raising concerns or complaints about single cases of care
Medics for Rare Disease – www.m4rd.org
Emotive – https://emotiveagency.com
Reserve your place here

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

IAG2 Online Workshop
2025-09-09 10:00 - 13:00 | ONLINE
Medics for Rare Disease has a vision of healthcare equity for everyone. We have been working with the Department of Health and Social Care since 2018 in order to achieve our mission.
We are hosting this online workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’.
We will be asking: What is healthcare professional awareness? How do we implement it throughout the NHS? How do we measure it? If you have practical ideas and suggestions that could inform these recommendations, WE WANT YOU to join us on the day.
Who do we want to attend:
* People who have practical ideas
* People who have experience of driving system change
* People who have experience developing services in the NHS
* People with experience designing and implementing e.g. Dementia Friendly Hospitals
* Healthcare professionals, people who work in the NHS and advocates alike!
This project (‘IAG2’) is being run by Medics for Rare Disease and Emotive with support from collaborators on the UK Rare Diseases Framework Forum and has been approved by The Department of Health and Social Care.
Keep in mind:
* We are not responsible for implementing the recommendations
* This will not be a forum for exploring single individual’s experiences
* This will not be a forum for raising concerns or complaints about single cases of care
About IAG2
Listen to this podcast episode to understand the background of the IAG2 and more details about the plan for the day.

Wales Rare Disease Research Network (RDRN) Inaugural Meeting
2025-09-26 | Swansea University Bay Campus, Fabian Way, Skewen, SA1 8EP
Ymunwch â ni ar gyfer cyfarfod cyntaf erioed Rhwydwaith Ymchwil i Glefydau Prin Cymru!
Join us for the very first RDRN meeting!

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.

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.
