patient advocacy

16th July 2026

World Orphan Drug Congress Europe 2026

Jo McPherson Amsterdam, biotech, cell therapy, clinical trials, Conference, drug development, ERDERA, Europe, gene therapy, genetic testing, Healthcare professionals, orphan drugs, patient advocacy, pharmaceutical industry, rare disease, rare diseases, World Orphan Drug Congress, World Orphan Drug Congress Europe 2026

The World Orphan Drug Congress Europe returns to Amsterdam from 26–28 October 2026, bringing together the global rare disease and orphan drug community for three days of collaboration, innovation and […]

16th July 2026

2nd European Congress on Rare Diseases & Orphan Drugs

Jo McPherson clinicians, European rare disease congress, External Event, Healthcare professionals, London events, medical education, orphan drugs, patient advocacy, Rare Disease Conference, Rare Disease Research, rare diseases, researchers

The 2nd European Congress on Rare Diseases & Orphan Drugs, organised by C2P Forum, brings together researchers, clinicians, industry leaders, policymakers and patient advocates to explore the latest advances in […]

16th July 2026

Future for Rare Online Webinar

Jo McPherson External Event, Future for Rare, Genetic Alliance UK, Healthcare professionals, patient advocacy, rare disease, Rare disease policy, webinar

Join our friends at Genetic Alliance UK for this online webinar exploring the future of rare conditions policy across the UK. The Future for Rare campaign is gathering views from […]

10th July 2026

Join Our Board: Trustee with Lived Experience of Rare Disease

Jo McPherson News, Vacancies Board Recruitment, Charity Governance, Charity Trustee, Health Equity, Lived Experience, medical education, Non-Executive, patient advocacy, patient voice, rare disease, Rare disease community, Trustee Recruitment, Trustee Vacancy, volunteering

We’re looking for a Trustee with lived experience of rare disease to join the Medics for Rare Disease Board. This is an exciting opportunity to help shape our strategic direction and ensure […]

8th July 2026

Rare Disease Is a Health Inequality: It’s Time for UK Policy to Reflect That

Lucy McKay Healthcare policy, Rare Disease Advocacy Core20PLUS5, Health Equity, Health inequalities, Human rights, medical education, NHS, patient advocacy, rare disease, Rare Disease Action Plan, Rare disease policy

I’ve been levelling up I have been a Commissioner on the Lancet Commission for Rare Disease for two years and we are fast approaching the point of writing up our findings […]

21st May 2026

Impact Storytelling

Lucy McKay Healthcare education, Impact Stories, Rare Disease Advocacy charity leadership, healthcare equity, healthcare inequality, impact storytelling, medical education, Medics for Rare Disease, NatWest SE100, patient advocacy, rare disease, social enterprise, storytelling

Paying for Medicine In 2010 I was offered a place at medical school! I had managed to secure a coveted place on the Graduate Entry Programme (GEP) at Barts and […]

14th May 2026

Medics for Rare Disease Recognised in the NatWest SE100 Top Social Enterprises Index

Megan Pullein Healthcare education, Impact Stories, Rare Disease Advocacy charity leadership, healthcare equity, healthcare inequality, impact storytelling, medical education, Medics for Rare Disease, NatWest SE100, patient advocacy, rare disease, social enterprise, storytelling

We are incredibly proud to share that Medics for Rare Disease has been recognised in the NatWest SE100 Index of the UK’s top social enterprises. A celebration of the country’s […]

26th March 2026

Too Young, Too Rare: What My PBC Diagnosis Taught Me About Flexibility, Complexity, and Care

Taise Campbell Lived Experience, Patient Story, Rare Disease Autoimmune Disease, Chronic Liver Disease, patient advocacy, Primary Biliary Cholangitis, Rare Disease Awareness, rare diseases, Young Adults & Chronic Illness

Rare diseases are often defined as conditions affecting fewer than 1 in 2,000 people. Individually they are uncommon, but collectively they affect millions of people worldwide. Despite this, many people […]

20th March 2026

Does Social Justice Exist in Rare Disease? We Need Your Voice!

Megan Pullein Uncategorised Global Study, Health Equity, patient advocacy, rare disease, Rare Disease Research, RDI-Lancet Commission, Social Justice

Patient Advocacy Groups Needed! We want your help and input on ‘Does social justice exist in rare disease?’ We are collaborating with the Children’s Hospital of Eastern Ontario (CHEO) to […]

28th February 2026

It’s Rare Disease Day!

Emma Huskinson Rare Disease Day Healthcare professionals, Learn your stripes, medical education, Medics for Rare Diseases, patient advocacy, rare conditions, Rare Disease Awareness, rare disease day, Rare Disease Day 2026, show your stripes

Happy Rare Disease Day everyone! We have been astounded by all of the engagement we have received for this year’s campaign already. Don’t forget to post your stripy sock photos […]