Learning from each other

Learn from the experience of other patient organisations across the world.

 

Australia: Biking to raise funds for research

Over forty people, some of them visually impaired, have recently completed a 700 kilometre bike ride across South-Eastern Australia.

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Battling paediatric cancers

SIOPE is a European organisation promoting optimal standards of care for children and young people with cancer.

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Rare diseases have to be taken seriously (ENSERio)

First study on healthcare and social needs of people living with rare diseases in Spain.

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The Nikolas Symposium and Research

It all started with two parents discovering that their son suffers from a rare disease.

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The UK Fragile X Society

Information and support for families and professionals

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Retinitis Pigmentosa: A vision ahead

Although Michael Griffith was developing Retinitis Pigmentosa (RP) in 1983, it was not his own condition that prompted him to establish Fighting Blindness (FB).

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Two associations, one battle

Chromosomes hold the genetic keys to all of the body's functions; disorders occur when there are errors on any of the body's 23 pairs of chromosomes.

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VML - Overcoming Lysosomal Diseases

Helping patients and supporting research

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Thalassaemia International Federation

Patient groups worldwide united in 1986 creating the Thalassaemia International Federation

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New Zealand Organisation for Rare Disorders

Far away but with similar issues  

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Rare Diseases in Australia: a piecemeal approach

Isolation is one of the many issues faced by rare disease patients all over the world. In Australia, where 20 million people live in a territory roughly the size of Europe, isolation takes on a very special meaning.

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The Federation of European Williams Syndrome Associations (FEWS)

A federation of patient groups sharing the common goal of improving the lives of Williams syndrome patients  

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Global Campaign to find all children with Progeria

Begun in late October 2009, the “Find the other 150” campaign is a global effort to find all children with Progeria throughout the world.

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Hereditary Spastic Paraplegia: Just one step

Advancing research: Just one small step can make a big difference

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ARSBH: creating equality across borders

Developing parity of treatment in Europe for Spina Bifida and Hydrocephalus

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New registry for rare diabetes

EURO-WABB is a new project aiming to establish a registry for Alström, Wolfram and Bardet Biedl syndromes and improve diagnostics, care, knowledge and treatment.

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Prevention is better than cure!

Learning from the International Federation for Spina Bifida and Hydrocephalus

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VHL online patient community: leverage for mutual support

Since December 2010, the Von Hippel-Lindau online patient community enables patients to meet, talk, learn and get stronger.

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NET: Cancer in Camouflage

NET is a condition often unrecognised or misdiagnosed. NET-groep is striving to remedy this situation, by thinking outside the box, much like former NET patient Steve Jobs.

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases