Websites linking to rareconnect.org

rareconnect.org was mentioned in 22 websites. Scroll down to view them.

Number of domains shown in this page: 22
Total results: 22

Displaying results:

Selbsthilfe EPP e.V. - "WENN SONNE WEH TUT"
  • Updated time: 07/12/28
7H33 Aorta Dissektion | Livet med Aorta Dissektion Typ A
Livet med Aorta Dissektion Typ A
    RUNX1 Research Program | The online community for individuals with RUNX1 FPD/AML
    The RUNX1 Research Program is a research and advocacy venture committed to funding world-class, innovative and cross-disciplinary cancer research to find a cure for those with the germline RUNX1 mutation, a familial platelet disorder with a predisposition to leukemia. The program also aims to support, inform, educate and connect patients and healthcare providers in the RUNX1 community. Frequently Asked Questions.
    • Analytics ID: 107702658-1
    • Creation date: 16/2/23
    • Updated time: 16/3/3
    • Valid until: 21/2/23
    A.I.P.I. - Associazione Ipertensione Polmonare Italiana onlusA.I.P.I. | Associazione Ipertensione Polmonare Italiana onlus
    Associazione Ipertensione Polmonare Italiana onlus
    • Analytics ID: 7768729-47
    • Creation date: 10/11/4
    • Updated time: 17/11/20
    • Valid until: 18/11/4
    Ehlers-Danlos syndrom riksförbund
    • Analytics ID: 86289705-1
    • Valid until: 20/9/11
    • Creation date: 03/9/11
    Cystinosis Research Network (CRN) - The acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.
    The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.
    • Analytics ID: 5122372-2
    • Creation date: 99/9/10
    • Updated time: 16/9/6
    • Valid until: 17/9/10
    About HESA - Hashimoto's Encephalopathy SREAT Alliance
    • Google Plus ID: +HesaonlineOrgMedia
    • Analytics ID: 62911690-1
    • Creation date: 13/3/21
    • Updated time: 18/2/17
    • Valid until: 19/3/21
    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
    Lowe Syndrome UK
    Set up in 2000, The Lowe Syndrome Trust supports families affected by Lowes Syndrome and funds medical research into Lowe Syndrome
    • Analytics ID: 55329280-2
    • Creation date: 01/11/29
    • Updated time: 16/11/22
    • Valid until: 21/11/29
    Home - dravet.ch
    Willkommen auf der Website der Vereinigung Dravet Syndrom Schweiz
    • Analytics ID: 41336631-1
    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
    Cryoglobulinemia, Vasculitis
    The Alliance For Cryoglobulinemia works to connect Patients. We want to help you understand how to live with Cryoglobulinemia. Cryoglobulinemia is a rare disease.
    • Analytics ID: 38228082-1
    • Creation date: 12/9/7
    • Updated time: 17/9/7
    • Valid until: 18/9/7
    Pemphigus Pemphigoid Foundation (IPPF) | a common hope an uncommon bond
    The IPPF provides patients & doctors worldwide with information about pemphigus and pemphigoid, & provides patients & their caregivers with comfort & support.
    • Analytics ID: 30707475-1
    • Creation date: 97/10/16
    • Updated time: 16/10/16
    • Valid until: 17/10/15
    NZORD - Home
    Rare disease information gateway, support groups directory, practical advice, health and disability resources, research information, news and issues.
    • Analytics ID: 17121647-49
    • Creation date: 01/6/22
    • Updated time: 17/6/9
    • Valid until: 18/6/22
    Home | Malattie Rare Toscana
      Ectodermal Dysplasia Society
      • Creation date: 00/9/21
      • Updated time: 17/9/14
      • Valid until: 18/9/21
      • Analytics ID: 37051913-1
      • Creation date: 10/6/3
      • Updated time: 17/3/12
      • Valid until: 17/6/3
      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
      Home - **American Behcet's Disease Association
      • Analytics ID: 27382051-1
      • Creation date: 97/9/29
      • Updated time: 15/6/21
      • Valid until: 25/3/17
      Delayed puberty
      One possible cause of delayed puberty in both males and females is Kallmann syndrome. Kallmann syndrome is a form of congenital hypogonadotropic hypogonadism (CHH) which is also associated with a lack of sense of smell. It is a congenital hormonal condition that prevents puberty from starting or fully completing leading to infertility and low levels of testosterone or oestrogen, known as hypogonadism.
      • Google Plus ID: 114766670487832643234
      • Creation date: 16/1/31
      • Updated time: 18/1/23
      • Valid until: 19/1/31
        Home :: AIFP Associazione Italiana Febbri Periodiche - AIFP FebbriPeriodiche
        Sito sulle sindromi autoinfiammatorie dell'Associazione Italiana Febbri Periodiche AIFP
        • Analytics ID: 1048009-6
        • Creation date: 09/2/12
        • Updated time: 17/6/7
        • Valid until: 18/2/12
        2018-07-18 09:25:17 - 0.0346