In recognition of International Rare Disease Day 2011, Inspire has compiled first-person narratives in a new report, The Road to Diagnosis: Stories from Patients with Rare Diseases.
The compilation, drawn from a selection of Inspire’s 170,000 members of its online patient support communities, is available free online by clicking here. (Note: Clicking link begins download of pdf report.)
Joyce Graff, founder and Executive Director of the VHL Family Alliance, a worldwide network of support groups for individuals and families affected by von Hippel-Lindau, a genetic tumor syndrome, wrote the foreword to the report. Graff, a former member of the board of the National Organization for Rare Disorders, wrote, “As we approach Rare Disease Day, every one of us needs to know the power of persistence, the power of collaboration, the power of asking questions.”
Brian Loew, CEO of Inspire, noted that the narratives contain some frustration and fear, but also resolve and hope. Loew noted the story by a 35-year-old Iowa woman named Dawn, who wrote, “I grieve for the person I was before being diagnosed and I’m working on who I’m supposed to be now. I’m sick a lot, but on the good days, I see so much more of what’s important and a little purpose of what I am.”
February 28 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 countries.
Princeton, NJ based Inspire (www.inspire.com) creates safe, moderated online communities, organized by medical condition, for patients to share information and to support one another. Inspire builds and manages these communities in partnership with more than 70 national patient advocacy and support organizations. Among the organizations are the National Osteoporosis Foundation, the National Psoriasis Foundation, the National Organization for Rare Disorders, VHL Family Alliance, Encephalitis Global, the Ovarian Cancer National Alliance, the Foundation for Sarcoidosis Research, and the National Fabry Disease Foundation.
CONTACT: John Novack, Director of Communications, Inspire, firstname.lastname@example.org. Follow Inspire on Twitter at https://twitter.com/teaminspire and on Facebook.