Healthcare professionals

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 0

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

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 […]

26th June 2026

Reflections from ECRD 2026: Putting People at the Centre of Rare Disease Care

Helen Maginnis Healthcare policy, Rare Disease, UK Rare Disease Framework diagnosis, Diagnostic odyssey, ECRD 2026, European Conference on Rare Diseases, Eurordis, Healthcare professionals, Holistic care, Medics for Rare Disease, mental health, Patient-centred care, Rare Disease Awareness, Rare Disease Care, Rare disease policy, rare diseases

Earlier this month, I travelled to Prague with Lucy McKay and Sheela Upadhyaya to attend the 13th European Conference on Rare Diseases and Orphan Products (ECRD 2026) on behalf of […]

Nurses supporting patients with rare diseases on International Nurses Day

13th May 2026

International Nurses Day: Supporting Rare Disease Nursing

Emma Huskinson Healthcare education, Nursing, Rare Disease Global Nursing Network, Healthcare professionals, International Nurses Day, Medics for Rare Disease, nurses, Nursing education, patient support, Rare Disease Awareness, rare disease nursing

It’s International Nurses Day and I would like to do a big shout out to our nursing friends out there! It is so important to recognise the extraordinary contribution nurses […]

5th March 2026

Thank you all for making Rare Disease Day 2026 our biggest yet

Emma Huskinson Awareness Campaigns, Rare Disease Day Healthcare professionals, Learn your stripes, medical education, NHS Awareness, Rare Disease Awareness, Rare disease community, Rare Disease Day 2026, rare disease education

Sending a huge thank you to all of you who helped to make Rare Disease Day 2026 so incredible. Once again you have overwhelmed us with our support, your creativity […]

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 […]

16th January 2026

6 weeks until Rare Disease Day 2026

Emma Huskinson Medics for Rare Disease, Rare Disease Day Healthcare professionals, Learn your stripes, Medics for Rare Disease, NHS, Rare Disease Awareness, Rare Disease Day 2026, Rare Disease Training, show your stripes

Watch this space for the launch of our NEW mini training video and make sure you have your stripey socks at-the-ready because Rare Disease Day is looming! Rare Disease Day […]

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14th January 2026

Rare Disease Day 2026: #ShowYourStripes & #LearnYourStripes

Jo McPherson awareness campaign, Healthcare professionals, Learn your stripes, medical education, medical students, Medics for Rare Disease, NHS, Rare Disease Awareness, rare disease day, Rare Disease Day 2026, rare disease education, Rare Disease Training, rare diseases, show your stripes

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 […]