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05/10/2018
Centros y Servicios

Asociación sin animo de lucro para el apoyo a las familias con niños con enfermedades raras o graves discapacidades de Bizkaia

05/10/2018
Centros y Servicios

The WASOG (World Association for Sarcoidosis and Other Granulomatous Disorders), was founded in 1987 by Dr. Geraint James in Milan, Italy, during the World Congress for Sarcoidosis. The topics WASOG is focussing on are interstitial lung diseases (ild). Many ild (e.g. sarcoidosis) are part of a larger systemic problem, where the lung may be a […]

05/10/2018
Centros y Servicios

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 a partner for authorities on a European level. Our work on joint activities is enabled by a mailing list permitting discussions, the exchange of experiences and ideas. All European Ichthyosis […]

05/10/2018
Centros y Servicios

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 testing. 2. To increase awareness. To educate the general public and health professionals about the dangers of the disease. To promote and share the best practices so that patients can […]

05/10/2018
Centros y Servicios

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.

05/10/2018
Centros y Servicios

The European League Against Rheumatism (EULAR) is the organisation which represents the patient, health professional and scientific societies of rheumatology of all the European nations. EULAR endeavours to stimulate, promote, and support the research, prevention, treatment and rehabilitation of rheumatic diseases. In line with UEMS, EULAR defines rheumatology as including rheumatic diseases of the connective […]

05/10/2018
Centros y Servicios

Asociación sin ánimo de lucro, formada por afectados, familiares y amigos colaboradores, que busca principalmente difundir su identidad y darse a conocer para que la información llegue a todas las personas, tanto afectados como a su entorno, y trabajar juntos para alcanzar la mejor calidad de vida posible de las personas afectadas por esta patología, […]

05/10/2018
Centros y Servicios

Gaucher, also referred to as Gaucher’s is an autosomal recessive disease and the most prevalent Lysosomal Storage Disorder (LSD) and is present in approximately 1 in 20,000 live births. Gaucher disease, also known as glucocerebrosidase deficiency, occurs when a certain lipid, glucosylceramide, accumulates in the bone marrow, lungs, spleen, liver and sometimes the brain. Despite […]