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IRDIRC International Rare Disseases Research Consortium
The International Rare Diseases Research Consortium (IRDiRC) teams up researchers and organizations investing in rare diseases research in order to achieve two main objectives by
Porphyrias Consortium
The Porphyrias Consortium aims to expand knowledge about the porphyrias and thereby benefit patients and their families. The Porphyrias Consortium enables a large scale collaborative
EPNET, European Porphyria Network
The EPNET mission is to improve lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by
ENERCA, European Network for Rare and Congenital Anaemias
ENERCA is an acronym for European Network for Rare and Congenital Anaemias. It started back in 2002, funded by the European Commission, with the purpose
Euro-Histio-Net. A reference network for Langermans Cell Histiocytosis and Associated Syndromes
Euro-Histio-Net ha sido constituido para aunar esfuerzos en el aumento del conocimiento de la enfermedad, la mejora en la cantidad y calidad del intercambio de
ENI, European Network for Ichthyosis
The European Network for Ichthyosis is an international patients network run by national European patients associations. eni is a common voice for ichthyosis patients and
FIRST, Foundation for Icthyosis and related skin types
Mission Statement Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, education, advocacy, and research funding for better treatments and
Iron Disorders Institute
Here you will find information about iron disorders: Hemochromatosis Juvenile Hemochromatosis Dysmetabolic Iron Overload Syndrome African Siderosis Iron Avidity Anemia of Inflammatory Response Iron Deficiency,
EFAPH European Federation of Associations of Patients with Haemochromatosis
EFAPH’s targets 1.To Inform patients, the general public and medical doctors in Europe about this disease and to guide individual and family screening through reliable
Scleroderma Research Foundation
The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly
International Sclerodermia Network
Full-service U.S. nonprofit established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
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