rare diseases

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 […]

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 […]

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 […]

26th February 2026

Global Launch of ‘Rare Disease 101 (Nursing)’

Jo McPherson ELearning, Nurses, Rare Disease 101 global health, healthcare equity, midwifery education, Nursing education, nursing workforce, professional development, rare and undiagnosed conditions, rare diseases

The Global Nursing Network for Rare Diseases (GNNRD), in collaboration with Medics for Rare Disease, has announced the launch of ‘Rare Disease 101 (Nursing)’, a free, foundational eLearning course designed […]

15th January 2026

European Conference on Rare Diseases & Orphan Products (ECRD 2026)

Jo McPherson ECRD 2026, Europe, Eurordis, Healthcare Policy, Hybrid Event, Medical Research, Orphan Products, patient advocacy, Rare Disease Conference, rare diseases

🗓 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 […]

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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 […]

27th March 2023

Have YOU heard of Familial Intracranial Aneurysms?

Melissa Clasen Mystery Disease Monday, Mystery Monday, News, Rare Disease 101, Uncategorised mystery monday, Rare Disease 101, rare diseases

Mystery Monday is BACK and this week we are focusing on Familial Intracranial Aneurysms! Thank you so much to HBA Support for the fantastic resources! Be sure to stay in […]

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30th June 2022

Showcase of Genomics across North Thames

Jo McPherson diagnosis, Genomics, HCPs, rare diseases 0

Join the North Thames Genomic Medicine Service showcase to find out how genomic medicine is transforming healthcare in their region. Genomic medicine is coming into every-day-practice for multi-disciplinary healthcare professionals […]

11th November 2021

Tune in now to the Rare Disease Podcast 4 Medics

Jo McPherson M4RD, Podcast daretothinkrare, HCPs, interviews, M4RD, podcast, rare diseases, The Rare Disease Podcast 4 Medics

The Rare Disease Podcast 4 Medics has launched! Each week we will bring you interviews with people from across the rare disease and medical world. We will be looking at […]