Websites, domains, hosts that links to eurordis.org

Community website for The Atypical HUS Foundation

O Grupo de Estudo de Doenças Raras tem como objetivo disponibilizar informação sobre cuidados de saúde.

At the Alfie Milne Trust we raise awareness and support for those that are suffering with a rare condition called Lymphangiomatosis

Join the National Organization for Rare Disorders (NORD) in raising awareness for the 30 million patients with rare diseases in the U.S. on Rare Disease Day®.

Utoolize is a web platform designed to help you get the most out of your video content by maximizing its visibility and its return of investment.

Descubre las Enfermedades Raras y cómo FEDER apoya a las personas que las sufren. Todo sobre las ER.

ProRaris est une organisation faîtière qui rassemble les associations de patients atteints de maladie rare et les patients orphelins d’association. ProRaris s’engage pour un accès équitable aux prestations des soins de santé. Elle veille à la mise en oeuvre du concept national maladies rares dans l’intérêt des personnes concernées.

Organizácia muskulárnych dystrofikov je nezisková organizácia s celoslovenskou pôsobnosťou.

Federazione Nazionale Italiana malati Sindrome Prader-Willi

Deutsche Syringomyelie und Chiari Malformation,e,V. DSCM, Syringomyelie, Syring, Syrinx, Chiari Malformation, ACM, Chiari, CM, Selbsthilfe,SHG, Rückenmark, Rückenmarkserkrankung, neurologisch, Zyste, Chronische Erkrankung, Neurologie, neurologische Erkrankung, Syringomyelie Therapie, Diagnose, gemeinnützig, Verein,Bundesverband, Mitglied, Beirat, Beiräte, Neurochirurg,

Razem pokonamy rdzeniowy zanik mięśni

European Gaucher Alliance

Support for sufferers and carers of Systemic Mastocytosis

Муковисцидоз: симптомы и лечение. Признаки муковисцидоза. Лечение муковисцидоза у детей и взрослых. Муковисцидоз - наследственная болезнь.

Angiodysplasie ist der Überbegriff für eine Gruppe von angeborenen Gefäßfehlbildungen

ENERCA means easy access to a high quality information on rare anaemias for patients, citizens, health professionals, stakeholders, authorities and pharmaceutical industry.

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publications and provides an opportunity for international networking and collaboration between patient organizations.

The website for Alstrom Syndrome International is meant to provide information and resources for those affected by Alstrom Syndrome as well as raise awareness.

Dedicado a las enfermedades raras en general, comentando la situación en España y sugiriendo herramientas útiles para las asociaciones pequeñas.

Selbsthilfe EPP e.V. - "WENN SONNE WEH TUT"

Herzlich Willkommen auf unseren Seiten, Selbsthilfe, Guillain Barré Syndrom, GBS, chronische inflammatorische demyelinisierende Polyneuropathie, CIDP

presentation du site de l'ANC (Association Nationale de Narcolepsie Cataplexie et des Hypersomnies Rares)

Bienvenidos a la web oficial de FMF España, la Asociación de enfermos de Fiebre Mediterránea Familiar de España.

La polypose familiale est une affection d'origine génétique provoquant le développement de nombreux polypes sur le colon. Le site de l'APTEPF vous décrit cette affection et son traitement

EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of rare disease patient organisations representing 745 rare diseases patient organisations in 65 countries. We are dedicated to improving the quality of life of all people living with rare diseases in Europe

Украинская организация родителей детей-инвалидов больных фенилкетонурией, история создания, цели и задачи, деятельность организации

Association des Malades Souffrant d'Angioedèmes - France

Här finns samlad information inom området för personer som lever med sällsynt diagnos och deras närstående samt för professionen.

La mission de l’Alliance Maladies Rares est de susciter, de développer, sur les questions communes aux maladies rares et aux handicaps rares, d’origine génétique ou non, toutes actions de recherche, d’entraide, d’information, de formation et de revendication.

La Dravet Italia ONLUS nasce con l’intento di migliorare la qualità della vita dei bambini affetti da questa grave forma di epilessia: la sindrome di Dravet.

El Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias de Burgos (Creer) del Imserso en Burgos se configura como un centro avanzado en la promoción, desarrollo y difusión de conocimientos, experiencias innovadoras y métodos de atención social a personas con enfermedades raras o poco frecuentes, y de alta especialización en servicios sociales de apoyo a familias y cuidadores y en servicios de prevención, promoción de la autonomía personal y participación social de las personas con dichas enfermedades.

The ORIGINAL Cystinosis Foundation. We are a non-profit organization, with more than 34 years of International experience in supporting and educating families and the medical community through the dissemination of educational literature, funding research, and annual conferences.

Serwis MATIO Fundacji Pomocy Rodzinom i Chorym na Mukowiscydozę

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Niño con Cáncer

Спинальная мышечная атрофия, помощь, информационная поддержка регистры международные Украинский Spinal muscular atrophy SMA Registry

L'AFSA : Association francophone du syndrome d'Angelman

Federación Mexicana de Enfermedades Raras