Discover the topics

Six Decide rare disease discussion topics were created in 22 European languages to help empower patients and patient representatives.

 

Cross border health care

Due to the increasingly diverse movement of EU citizens, a real need exists for better coordination of health systems and policies across the EU.

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Diagnosis, information to the patient, genetic counselling

An emotional time for patients and their families, varying views exist on phases of the diagnosis in so far as the target of testing, notification, and follow up counselling.

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Neonatal screening

Adopted by most countries around the world, newborn screening is the process of testing newborn babies for treatable diseases.

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Orphan drugs

High development costs, limited markets and exclusive commercialisation. Should there be a maximum limit of expenditure for a single patient?

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Preimplantation genetic diagnosis (PGD)

Procedures performed on embryos prior to implantation, sometimes even on oocytes prior to fertilization, are considered another way to prenatal diagnosis of genetic conditions.

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Stem cells

Able to replace damaged cells, stem cells are of great medical importance. Yet, controversy exists on the methods and techniques used in their development.

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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