Oct. 18, 2012
Posted at October 18, 2012 8:00 am by Peter L Saltonstall

7 Responses to Welcome to our blog!

  1. trish cook says:

    I hope see topics about how patients can be successful at getting their insurance company to cover treatments for rare diseases. I have seen and been referred to lots of programs for people needing financial help. That is not me. I want help educating the insurance companies.

  2. Look forward to staying current with your new blog. Congratulations!!

  3. Congratulations on your new blog! Looking forward to keeping up with the latest news and developments regarding rare diseases. Would love to see increased funding for research as a result of increased awareness of these devastating illnesses. All best wishes, Lynn

  4. I am very excited about this new blog and look forward to current issues on rare disease news, awareness, legislation and patient voices.

    It would be beneficial to educate patients and new patient organizations on the advocacy path including social media and international networks. Also education on pharm and biotech involvement for are diseases would be beneficial.

    Thank you for this great effort.

    Marianne

  5. Great blog that I am sure will convey much needed information and be of great benefit to all members of NORD and the rare disease communities!
    Thanks

  6. I am excited to hear about this! I have Cowden’s Syndrome and Lhermitte-duclos which affects 1/200,000. I am going to list this on my blog in hopes to raise awareness for CS. Thank you!

  7. Mary Dunkle says:

    Thanks for all the posts and emails about NORD’s new blog. We look forward to good conversations on a broad range of topics. Thanks, too, for posts such as this one on The Catalyst.

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