Jun. 11, 2014
Posted at June 11, 2014 6:13 pm by Lisa Phelps

5 Responses to Not a Dry Eye in the Room: Families Tell FDA about Their Daily Struggles

  1. I wish I could have joined this group. Sounds like it was a powerful event. Please send me an email with any updates for future events such as this. I’m interested in supporting this cause in any way possible.

    I have two young adult children living with PKU. My husband and I started a clinical nutrition company in 2000 dedicated to the inborn errors of protein metabolism community.
    I believe we have a strong voice.

    Thank you!

  2. Erica Thiel says:

    Thanks for all NORD does for our rare diseases!
    Although I had the opportunity to go through the Foundation I work w I knew I wouldn’t be feeling great and so I didn’t attend. Living w a rare disorder and many if it’s neurological affects like complex but not well understood Hydrocephalus.
    Thank you again

    Erica
    http://www.rarelydefined.blogspot.com

  3. Thanks to NORD for sponsoring my travel to attend this important meeting at the FDA. The networking with other patient advocates, associations and with industry is an invaluable part of raising awareness and making a difference!

  4. Lee Wilson says:

    Thank you . I hope to be a part of something like this.

  5. Gina Williams says:

    Thanks to NORD for facilitating the meeting the evening before to help us prepare and network. Also, thanks to NORD for all they do, for sponsoring me for this event, as well as the advocacy for our families.

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