Rare Disease Online Support Community Reaches Milestone

Top Quote Inspire's National Organization for Rare Disorders (NORD) Support Community, an online oasis for people worldwide who are affected by rare diseases, has surpassed 10,000 members. End Quote
  • (1888PressRelease) February 15, 2012 - On the eve of Rare Disease Day 2012, Inspire's National Organization for Rare Disorders (NORD) Support Community has surpassed 10,000 members worldwide. In total, Inspire has over 30,000 members affected by rare diseases across multiple communities.

    "It's great to reach this milestone for the community with our partner, NORD, so close to Rare Disease Day," said Inspire CEO Brian Loew, "when there is increased attention to people worldwide affected by rare diseases."

    Inspire's NORD Rare Disease Support Community enables patients and caregivers to connect and share information about clinical trials, treatments, best practices, meetings, support services, insurance, employment issues, and everyday life. The community has members from 103 countries who have entered over 4,000 distinct medical conditions in their profiles. The group is highly engaged--these members have written well over 50,000 posts.

    One member, a 45-year woman from the Philippines, wrote recently that on the online community, "each and everyone here are our shoulder to lean on." Another woman, from Southern California, wrote, "I joined this site at one of those 'I just don't think I can take it anymore' times, and I must say, the warmth, care, emotional and practical support I have received via this network has helped me get through some very dark hours."

    Rare Disease Day, an international advocacy day, is Feb. 29.

    Other Inspire communities for people affected by rare diseases include:

    · ALS Advocacy Support Community

    · Ehlers-Danlos National Foundation Support Community

    · Encephalitis Global Support Community

    · Fibromuscular Dysplasia Society of America Support Community

    · National Adrenal Diseases Foundation Support Community

    · National Fabry Disease Association Support Community

    · Neurofibromatosis, Inc. Support Community

    · Tuberous Sclerosis Alliance Support Community

    · VHL Family Alliance Support Community

    · Wilson Disease Association Support Community

    Inspire reaches nearly one million users each month, and has 230,000 registered members who have together written 3.5 million posts.

    Princeton, N.J.-based Inspire accelerates medical research through the creation and operation of safe, moderated online communities, organized by medical condition, for patients and caregivers. Inspire builds and manages these communities in exclusive partnership with more than 75 national patient advocacy and support organizations. Among the organizations are the Alzheimer's Foundation of America, the National Osteoporosis Foundation, the Bladder Cancer Advocacy Network, the Ovarian Cancer National Alliance, the National Psoriasis Foundation, and the Asthma and Allergy Foundation of America. For more information, call (800) 945-0381.

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