FEDRA -  Federação de Doenças Raras de Portugal

APADR - Aliança Portuguesa de Associaçiones das Doenças Raras

Constituted in February, the 13 th 2008, FEDRA -  Federação de Doenças Raras de Portugal, emerged in order to give voice to the many patients associations with rare diseases, whom joined us with the same cause: to help the rare diseases patients, calling for social conscience and, specially, for the involvement of the Portuguese government, in order to achieve better health politics and more investigation on this area. Part of this goal has already been achieved: in December 2008, the Portuguese government approved the first National Plan for Rare Diseases. This is just the beginning of a long journey. Promoting investigation, creation of data bancs and solid political intervention will allow a better future to these patients, so many times forgotten and marginalized

FEDRA is coordinated By Eurordis and has the following association members: Associação Raríssimas, Associação de Spina Bífida e Hidrocefalias de Portugal e Associação de Leucemias e Linfomas, Associação Portuguesa de Síndrome de Asperger, Associação de Síndrome de Rett , SOS Hepatites, Associação Portuguesa de Doentes de Hungtinton, Associação Portuguesa de Fenilcetonúria, Associação Portuguesa de Osteógenese Imperfeita, Associação Portuguesa de Doentes de Parkinson, Associação Portuguesa de Esclerose Lateral Amiotrófica, Associação de Machado Joseph, Associação Portuguesa de Doentes com Imunodeficiências Primárias, Associação Nevo Portugal e Associação Portuguesa de Epidermólise Bulhosa.

-----------------------------------------------------------------------------------------------------

Aliança Portuguesa de Associações das Doenças Raras (APADR) was created in 2008 with the purpose of representing its members and helping them to achieve their goals and, ultimately, defend and help the rare disease patients. APADR deals with health, social security and education institutions and works with national and international entities that pursue identical goals and the rare disease patients’ integration, namely Eurordis.
APADR made many suggestions to the Rare Disease National Plan and participated actively on the workgroups created in order to implement it. Unfortunately, a long way seems still to be needed in order to make it real.
Presently APADR has the following formal members: APAHE – Associação Portuguesa de Ataxias Hereditárias, APART – Associação de Pais e Amigos de Portadores do Síndroma de Rubinstein-Taybi, APH – Associação portuguesa dos Hemofílicos, APHP – Associação Portuguesa de Hipertensão Pulmonar, APL – Associação Portuguesa das Doenças do Lisosoma, APN – Associação Portuguesa de Doentes Neuromusculares, APPDH – Associação Portuguesa de Pais e Doentes com Hemoglobinopatias, PXE Portugal – Associação Pseudoxantoma Elástico Portugal, Respira – Associação Portuguesa de Pessoas com DPOC e outras Doenças Respiratórias Crónicas.