Websites linking to eurordis.org

eurordis.org was mentioned in 70 websites. Scroll down to view them.

Number of domains shown in this page: 70
Total results: 70

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Las enfermedades raras en España
Dedicado a las enfermedades raras en general, comentando la situación en España y sugiriendo herramientas útiles para las asociaciones pequeñas.
  • Analytics ID: 66914837-1
  • Google Plus ID: 116872576739658339647
  • Google Adsense ID: ca-pub-1556223355139109
  • Creation date: 11/10/29
  • Updated time: 17/10/30
  • Valid until: 18/10/29
Муковисцидоз - симптомы, лечение, муковисцидоз у детей и взрослых
Муковисцидоз: симптомы и лечение. Признаки муковисцидоза. Лечение муковисцидоза у детей и взрослых. Муковисцидоз - наследственная болезнь.
  • Creation date: 12/7/13
  • Updated time: 17/6/19
  • Valid until: 18/7/13
Bienvenue sur notre site de l’ANC - anc-narcolepsie
presentation du site de l'ANC (Association Nationale de Narcolepsie Cataplexie et des Hypersomnies Rares)
  • Creation date: 06/3/16
  • Updated time: 17/6/28
  • Valid until: 19/3/16
Rare Disease Day USA | Home
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®.
  • Analytics ID: 5033474-2
  • Creation date: 09/1/13
  • Updated time: 12/5/28
  • Valid until: 18/1/13
Associazione Italiana Delezione Cromosoma 22 - [+] Home page AIdel22 Onlus
CMS ohne Datenbank - CMSimple ist ein Content Management System, das keine Datenbank braucht.
  • Analytics ID: 85327936-1
  • Creation date: 03/3/27
  • Updated time: 17/4/12
  • Valid until: 18/3/27
G6PD Deficiency Association - Home
The first Web site established to offer information for G6PD deficient persons. Established in 1995 with the help of the late Ernest Beutler M.D. and the active support of Lucio Luzzatto M.D. Includes official list of drugs to avoid along with trade-names, printable brochure, forum and mailing lists. In both Italian and English.
  • Analytics ID: 29030140-1
  • Creation date: 00/5/9
  • Updated time: 17/4/13
  • Valid until: 18/5/9
FEMEXER – Federación Mexicana de Enfermedades Raras
Federación Mexicana de Enfermedades Raras
  • Google Plus ID: +FemexerOrg_fanpage
  • Creation date: 11/3/16
  • Updated time: 17/3/11
  • Valid until: 18/3/16
Home - VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties
De VSOP zet zich op een breed terrein in voor zeldzame en genetische aandoeningen (waaronder erfelijke, chromosomale en aangeboren aandoeningen) en voor samenlevingsbrede thema's op het terrein van ethiek, onderzoek en preventie.
  • Analytics ID: 8092249-3
Alström Syndrome International | Supporting those affected by Alström Syndrome
The website for Alstrom Syndrome International is meant to provide information and resources for those affected by Alstrom Syndrome as well as raise awareness.
  • Analytics ID: 33170498-1
  • Creation date: 02/10/4
  • Updated time: 17/9/5
  • Valid until: 18/10/4
HOME - Fundacja MATIO
Serwis MATIO Fundacji Pomocy Rodzinom i Chorym na Mukowiscydozę
  • Google Plus ID: 108051784528587783542
  • Analytics ID: 43483647-1
Nos nouvelles missions à pourvoir.
Joomla! - le portail dynamique et système de gestion de contenu
  • Analytics ID: 3725968-1
  • Creation date: 02/2/19
  • Updated time: 17/2/19
  • Valid until: 18/2/19
Vasculitis UK - The UK's Leading Vasculitis Charity
Vasculitis UK aims to support those suffering from vasculitis diseases and their families by providing information and advice.
  • Analytics ID: 26271847-2
  • Creation date: 08/7/10
  • Updated time: 14/7/10
  • Valid until: 24/7/10
Welcome ~ APS Foundation of America, Inc
  • AddThis User: xa-4a21b4387bef1480
  • Creation date: 05/6/18
  • Updated time: 16/10/31
  • Valid until: 17/6/18
Connecting Rare Disease Patients Globally - RareConnect
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.
  • Analytics ID: 4015132-5
  • Creation date: 11/5/29
  • Updated time: 17/4/20
  • Valid until: 18/5/29
  • Creation date: 03/6/6
  • Updated time: 15/9/24
  • Valid until: 18/6/6
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
  • Analytics ID: 69825661-1
  • Creation date: 15/7/13
  • Updated time: 16/7/13
  • Valid until: 17/7/13
El tintero | Página web del autor, traductor e investigador Fernando J. Palacios León
Este es el extracto de la página de inicio
  • Creation date: 17/10/22
  • Updated time: 17/10/22
  • Valid until: 18/10/22
Aismme: Associazione Italiana Sostegno Malattie Metaboliche Ereditarie - Onlus
Aismme è l'associazione che promuove lo screening neonatale metabolico allargato. Sito punto di riferimento per tutti i genitori i cui figli hanno malattie rare e cercano informazioni o aiuto
  • Creation date: 05/11/22
  • Updated time: 16/9/28
  • Valid until: 18/11/22
Dgenes – Asociación de Enfermedades Raras
    • Analytics ID: 37051913-1
    • Creation date: 10/6/3
    • Updated time: 17/3/12
    • Valid until: 17/6/3
    European Society of Human Genetics: Home
    • Creation date: 99/9/6
    • Updated time: 12/8/8
    • Valid until: 21/9/6
      Associació Catalana de Trastorns Metabòlics Hereditaris | Trastorns Metabòlics Hereditaris
      • Analytics ID: 11629138-1
      • Creation date: 06/11/9
      • Updated time: 17/11/10
      • Valid until: 18/11/9
      Stowarzyszenie Chorych na Mukopolisacharydozę (MPS) i Choroby Rzadkie
      • Analytics ID: 16549374-6
      Ectodermal Dysplasia Society
      • Creation date: 00/9/21
      • Updated time: 17/9/14
      • Valid until: 18/9/21
      Home | Alfie Milne Lymphangiomatosis Trust
      At the Alfie Milne Trust we raise awareness and support for those that are suffering with a rare condition called Lymphangiomatosis
      • Analytics ID: 25462977-1
      • Creation date: 11/8/29
      • Updated time: 17/8/23
      • Valid until: 19/8/29
      AISP Associazione Sindrome di Poland ONLUS
      • Analytics ID: 36528814-1
      • Creation date: 03/10/28
      • Updated time: 16/9/9
      • Valid until: 18/10/28
      zogo.sk | Zruženie Ojedinelých Genetických Ochorení
      • Analytics ID: 28933335-1
      Bundesverband angeborene Gefäßfehlbildungen e.V.
      Angiodysplasie ist der Überbegriff für eine Gruppe von angeborenen Gefäßfehlbildungen
      • Updated time: 15/7/29
      EGA - European Gaucher Alliance
      European Gaucher Alliance
      • AddThis User: ra-56f290c901169d3f
      • Analytics ID: 7109128-2
      • Creation date: 09/1/20
      • Updated time: 16/9/22
      • Valid until: 20/1/20
      uniamo.org | uniamo federazione italiana malattie rare onlus | benvenuti in uniamo.org
      UNIAMO FIMR onlus, Federazione Italiana Malattie Rare, è l'alleanza italiana delle associazioni di pazienti e familiari colpiti da malattie rare.
      • Analytics ID: 45460786-2
      • Creation date: 02/7/6
      • Updated time: 17/6/30
      • Valid until: 18/7/6
      Selbsthilfe EPP e.V. - "WENN SONNE WEH TUT"
      • Updated time: 07/12/28
      Home | Malattie Rare Toscana
        European Network for Rare and Congenital Anaemias - Enerca
        ENERCA means easy access to a high quality information on rare anaemias for patients, citizens, health professionals, stakeholders, authorities and pharmaceutical industry.
        • Creation date: 03/3/25
        • Updated time: 17/11/7
        • Valid until: 19/3/25
        Association Belge du Syndrome de Marfan
        • Analytics ID: 93686607-1
        • Creation date: 00/7/25
            Nationella Funktionen Sällsynta Diagnoser
            Här finns samlad information inom området för personer som lever med sällsynt diagnos och deras närstående samt för professionen.
            • Analytics ID: 41880469-1
            • Valid until: 18/12/9
            • Creation date: 11/12/9
            Association Française du syndrome d'Angelman - AFSA
            L'AFSA : Association francophone du syndrome d'Angelman
            • Analytics ID: 26853557-28
            • Creation date: 00/1/24
            • Updated time: 18/1/24
            • Valid until: 19/1/24
            Associazione Italiana Niemann Pick - ONLUS - BENVENUTO
            • Creation date: 05/8/2
            • Updated time: 17/7/26
            • Valid until: 18/8/2
            Welcome to the Polycystic Kidney Disease (PKD) Charity UK
            PKD Charity - UK charity and patient support group dedicated to improving the lives of everyone affected by all forms of PKD. Support, help, research.
            • Analytics ID: 1288135-1
            • Updated time: 18/2/21
            Federación Española de Enfermedades Raras
            Descubre las Enfermedades Raras y cómo FEDER apoya a las personas que las sufren. Todo sobre las ER.
            • Analytics ID: 19843317-1
            • Creation date: 03/10/10
            • Updated time: 16/11/19
            • Valid until: 17/10/10
            Federación Española de Padres de Niños con Cáncer Home - Federación Española de Padres de Niños con Cáncer - La Federación Española de Padres de Niños con Cáncer lucha por mejorar la calidad de vida de los menores con cáncer y sus familias en España.
            Niño con Cáncer
            • Google Plus ID: 106791832700511842101
            • Analytics ID: 52596419-1
            • Creation date: 01/2/6
            • Updated time: 17/5/22
            • Valid until: 18/2/6
            Deutsche Syringomyelie und Chiari Malformation e.V.
            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,
            • Updated time: 15/8/3
            O Grupo de Estudo de Doenças Raras tem como objetivo disponibilizar informação sobre cuidados de saúde.
            • Google Plus ID: 102315173586512211859
            • Google Adsense ID: ca-pub-1556223355139109
            Utoolize | Increase Video Viewers Engagement
            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.
            • Analytics ID: 92154844-1
            • Creation date: 10/5/25
            • Updated time: 16/5/20
            • Valid until: 18/5/25
            Associazione Italiana Amaurosi Congenita di Leber I.A.L.C.A. ONLUS
            • Google Adsense ID: ca-pub-1556223355139109
            • Analytics ID: 74489970-1
            • Creation date: 05/5/18
            • Updated time: 17/4/18
            • Valid until: 18/5/18
            - tre8bre -
            • Analytics ID: 21365624-1
            • Google Plus ID: 103654885867745359282
            • Google Adsense ID: ca-pub-1556223355139109
            Welcome to the Frontpage - The International Federation for Spina Bifida and Hydrocephalus
            International Federation for Spina Bifida and Hydrocephalus
            • Analytics ID: 23371646-1
            • Creation date: 00/8/10
            • Updated time: 16/12/29
            • Valid until: 18/8/10
            Fundacja SMA – Razem pokonamy rdzeniowy zanik mięśni
            Razem pokonamy rdzeniowy zanik mięśni
            • Google Plus ID: +FundacjaSMA
            • Analytics ID: 57661672-1
            Die Interstitielle Zystitis (IC) ist eine chronische Entzündung der Blasenwand, die mit Schmerz und Harndrang verbunden ist. Diese Site möchte Mut machen und informieren.
            • Google Plus ID: 102145578233721699516
            • Updated time: 10/2/22
            Český svaz hemofiliků - Domů
            Český svaz hemofiliků
            • Analytics ID: 6656550-21
            Children with Spinal Muscular Atrophy
            Спинальная мышечная атрофия, помощь, информационная поддержка регистры международные Украинский Spinal muscular atrophy SMA Registry
            • AddThis User: ra-4def2f2e680b99d8
            • Analytics ID: 52712964-2
            • Valid until: 18/6/29
            • Creation date: 06/7/1
            AMSAO - Accueil
            Association des Malades Souffrant d'Angioedèmes - France
              ProRaris - Alliance Maladies Rares Suisse :: Alliances Maladies Rares :: Suisse
              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.
              • AddThis User: Conchita123
              • Analytics ID: 72572473-1
              Premio Giornalistico OMAR per le Malattie Rare - Premio O.Ma.R Malattie Rare
              Premio Giornalistico OMAR per le Malattie Rare
              • Analytics ID: 45771232-1
              • Creation date: 12/12/6
              • Updated time: 17/12/7
              • Valid until: 17/12/6
              EURORDIS - The Voice of Rare Disease Patients in Europe
              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
              • Google Plus ID: 114387522754314829925
              • Analytics ID: 4015132-1
              • Creation date: 00/11/23
              • Updated time: 16/12/21
              • Valid until: 17/11/23
              Faces of Spina Bifida -
              • Analytics ID: 27978676-1
              • Google Plus ID: 113948922743241786580
              • Google Adsense ID: ca-pub-5397409420794935
              • Creation date: 11/12/29
              • Updated time: 16/12/21
              • Valid until: 17/12/29
              CRE Enfermedades Raras. Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias de Burgos :: Inicio
              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.
              • Analytics ID: 2164881-29
              Social Platform | The platform of European Social NGOs
              • AddThis User: ra-5146f6c11dd3ac2d
              • Analytics ID: 42470359-1
              • Creation date: 99/7/30
              • Updated time: 17/7/31
              • Valid until: 18/7/30
              • Updated time: 17/12/13
              FRAX e.V. – Interessengemeinschaft
              • Analytics ID: 11019158-6
              • Updated time: 10/12/14
              Herzlich Willkommen auf unseren Seiten - GBS und CIDP Selbsthilfe
              Herzlich Willkommen auf unseren Seiten, Selbsthilfe, Guillain Barré Syndrom, GBS, chronische inflammatorische demyelinisierende Polyneuropathie, CIDP
              • Creation date: 16/7/6
              • Updated time: 17/10/9
              • Valid until: 18/7/6
              Prader Willi
              Federazione Nazionale Italiana malati Sindrome Prader-Willi
              • Analytics ID: 41504628-4
              • Creation date: 01/6/27
              • Updated time: 17/10/28
              • Valid until: 18/10/12
              Vzácná onemocnění
              • Analytics ID: 48470135-1
              OMD v SR - Aktuality
              Organizácia muskulárnych dystrofikov je nezisková organizácia s celoslovenskou pôsobnosťou.
              • Analytics ID: 11484234-1
              Alliance Maladies Rares : un collectif, un mouvement et un réseau.
              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.
              • Analytics ID: 39978101-2
              • Creation date: 01/9/21
              • Updated time: 17/8/21
              • Valid until: 18/9/21
              BioPontis Alliance for Rare Diseases - A Philanthropic Alliance Turning Science to Medicines
              • Analytics ID: 68828805-1
              • Creation date: 14/8/27
              • Updated time: 17/2/14
              • Valid until: 18/8/27
              2018-07-18 09:42:10 - 0.0706