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Susannah Fox

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Rare Disease Day 2013

February 28, 2013 By Susannah Fox 5 Comments

People living with rare conditions inspire my work every day. A few resources to check out:

Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list

Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness

Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer Healthcare

Filed Under: key people, peer-to-peer health care Tagged With: National Organization For Rare Disorders, Rare Disease, Wendy White

Reader Interactions

Comments

  1. Marcia Zorn says

    February 28, 2013 at 8:18 am

    I think another useful resources is the NIH Office of Rare Diseases and Research. See http://rarediseases.info.nih.gov/AboutUs.aspx

    Reply
    • Susannah Fox says

      February 28, 2013 at 8:21 am

      Yes! Thank you, Marcia. And please, let’s keep those resources coming. There are so many stories, so many avenues for discovery when it comes to rare disease. I’d love to hear about others.

      Reply
  2. Susannah Fox says

    February 28, 2013 at 8:41 am

    Already found an article worth adding:

    “Families Push for New Ways to Research Rare Diseases” by Amy Dockser Marcus in the Wall Street Journal
    http://online.wsj.com/article/SB10001424127887324432004578306364187833702.html

    Reply
  3. Bob West says

    February 28, 2013 at 8:51 am

    Thanks Susannah, great advertisement for such a worthy cause. I would like to vouch for the Office of Rare Diseases Research mentioned by Marcia Zorn above: See http://rarediseases.info.nih.gov/AboutUs.aspx

    My mantra is “We’re ALL zebras (when you hear the sound of hoofbeats, think ZEBRAS, not horses; [google, if not familiar with this phrase]). That’s not to make light of the seriousness of rare diseases of significant physical, social and emotional impact, but to indicate that: 1) resources are now available to get to the bottom of many of the diseases (e.g. whole genome sequencing and/or exome sequencing) and 2) by understanding rare disease we facilitate our understanding of diseases not so rare that plague many other members of society.

    Reply
    • Susannah Fox says

      February 28, 2013 at 10:11 am

      Thanks, Bob, well said.

      Reply

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