About rare disease Decide

PlayDecide participant

Deliberative patients’ debates

The Decide debate sessions were developed to familiarise patients and their representatives with complex scientific issues and to enable them to better advocate their cause.

Before this, rare disease patients often felt lost and isolated, searching for years to get a diagnosis, fighting every day for treatment and information, feeling that they didn’t have a say in decision making, even when they are part of a patient group.

POLKA (Patients ‘ Consensus on Preferred Policy Scenarii for Rare Diseases) was a 3-year project begun in September 2008, conducted by EURORDIS and its partners, and co-financed by the EU Public Health Programme 2008-2013, DG Sanco. The central idea of this project was to foster the opinion of patient representatives on future European policies for rare diseases, or to collect their views on existing ones.

Simona Bellagambi UNIAMO (Italian Rare Disease Federation), a rare disease activist for many years, believes that Decide helps patients and their representatives think for themselves.

This member’s verdict is that Decide really helps people to understand a topic and go beyond general opinion and cliché. “For a patient, the idea that you can influence public matters on rare diseases is crucial and I think that the Decide topics help this empowerment.”

Beata Boncz of HUFERDIS (Rare Diseases Hungary) was very enthusiastic to organise a session once she heard about the Decide project, but getting people together for a session turned out to be tricky.

“They either said that they had no opinion to voice, that they had no time or that they were not interested. But 10 minutes after the session started, they were enjoying it very much and participating actively in an enjoyable and efficient way.”

Discussion topics to make voices heard

Launched as part of the POLKA (Patients’ Consensus on Preferred Policy Scenarii for Rare Disease) project, the Decide topics are designed to empower patients and their representatives to better advocate of their cause.

Six topics exist in 22 European languages:

  1. Cross-border health care
  2. Diagnosis, information to the patient, genetic counseling
  3. Neonatal screening
  4. Orphan drugs
  5. PGD (Preimplantation genetic diagnosis)
  6. Stem cells


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Page created: 12/03/2011
Page last updated: 06/08/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer 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