FEDER suggests 13 initiatives to support rare diseases patients

They are the result of consensus between over 250 associations of patients with rare diseases

March 8th, 2013


The Spanish Federation for Rare Diseases (FEDER) has proposed to the Spanish Government a set of 13 measures aimed at improving the quality of life of rare diseases patients and give them the support they need. The list of initiatives includes promoting research on these diseases, declaring them chronic diseases and exempting affected families from pharmaceutical copayment.

Juan Carrion, president of FEDER, presented the 13 initiatives in a ceremony held in Seville. He complained that the economic crisis is seriously affecting people with rare diseases, people needed of an additional support from authorities. He assured that the health reforms implemented in Spain in 2012 have led to a significant decline in patient rights.

During the Rare Disease Day the federation claimed for the implementation of 13 proposals for 2013. They are the result of consensus between over 250 associations of patients with rare diseases. FEDER asks the public authorities to express their commitment, solidarity and responsibility through the publication of a work plan including the following 13 suggestions:

1. Declaring rare diseases to be chronic diseases in the National Health Plan and a priority to public health.

2. Exempting families with rare diseases from pharmaceutical copayment.

3. Promoting measures to ensure equity in access to vital medicines for families with rare diseases through its inclusion among the services of the NHS.

4. Creating and publishing a Spanish map of reference experts in rare diseases.

5. Certificating at least ten centers, services and reference units in the Spanish NHS in 2013.

6. Boosting research in rare diseases through the reference centers, services and units.

7. Establishing and publishing a protocol for patient derivation to ensure effective care of families with rare diseases in any part of Spain.

8. Support the FEDER proposal for cross-border healthcare mobility.

9. Establishing care and general information units for people with rare diseases in every Spanish autonomous community.

10. Participating in the International Classification of Disability and Health Management.

11. Adapting the evaluation criteria for disability in rare diseases.

12. Supporting students with special educational needs by incorporating educational and healthcare resources.

13. Ensuring professional inclusion through flexibility and adapting work and location conditions.

Information via: Europa Press

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