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Associação Brasileira de Porfiria-ABRAPO
Organization
Associação Brasileira de Porfiria-ABRAPO Email: contato@porfiria.org.br Presidente: Ieda Maria Scandelari Bussmann Office Rua Professora Rosa Saporski 1053 Bairro Mercês Curitiba - Paraná - Brasil 80810-120 Tel.: 55 41 9151-5586 ABRAPO was born as an idea from Bénie and Ieda Maria Scandelari Bussmann daughter and mother who faced difficulties until their diagnosis in 2004 and 1978, respectively In April 2006 with the help of the family the first steps towards the creation of the Brazilian Porphyria Association were done Our work volunteer and basically done by internet is: raise awareness, provide support to patients and their families, provide guidance to physicians and other health professionals, register patients, physicians and other health professionals, and work with the government to obtain a service program to patients with porphyrias. Orientation is given to patients mainly via email and phone where most frequent topics include: information on Panhematin and Normosang, medical care, diagnostic testing, drug lists, nutrition (food rich in carbohydrates), among others.

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