rare disease

22nd September 2026

A Proud Day at Westminster with Rare4Schools

Emma Huskinson Rare Disease Education Children and Young People, education, rare disease, Rare Disease Awareness, Rare4Schools, Westminster 0

Dr Emma Huskinson, Medical Comms Lead, shares her reflections on representing Medics for Rare Disease at the launch of Rare4Schools at Westminster. Tuesday was one of those days that I […]

28th July 2026

What Health Care Professionals Are Asking us About Rare Disease – and Why it Matters!

Lucy McKay Healthcare Professionals, Rare Disease Education Continuing professional development, Genetic conditions, genetics, Healthcare professionals, medical education, medical students, Medics for Rare Disease, Patient-centred care, rare disease, Rare Disease 101, Rare Disease Awareness, rare disease diagnosis

There are over 6,000 rare diseases, and while it is not possible for healthcare professionals to know about every individual condition, collectively rare diseases cause similar patterns of healthcare challenges. […]

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

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 […]

16th June 2026

Rare Disease Quality Standards QS214

Emma Huskinson Healthcare education, Healthcare policy, Medical Education, Uncategorised Healthcare Policy, NICE, patient care, QS214, rare disease, Rare Disease Care, Rare Disease Quality Standard NICE QS214 Rare Disease Rare Disease Care Healthcare Policy Diagnosis Patient Care NHS

Rare Disease Quality Standards QS214 This year, NICE published the first ever Rare Disease Quality Standard (QS214). This was a huge milestone for the rare community. It was published at […]

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 […]

13th May 2026

ABPI Annual Conference 2026: turning ambition into action

Sheela Upadhyaya Clinical Research, Conferences & Events, Healthcare policy, NHS, Rare Disease ABPI, ABPI Annual Conference, NHS, rare disease, UK life sciences

On 23rd April 2026 (tube strike day) I managed to navigate my way around London’s transport system to attended the ABPI Annual Conference representing Medics for Rare Disease. The conference […]