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National Disability Forum

11/21/2017

 
We are very happy to have been invited to take part in the Social Security Administration’s National Disability Forum on Compassionate Allowances and Rare Diseases.  You can participate in the forum through teleconference and by submitting ideas and questions.  Please see the invitation below for more details.
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You’re invited!
​

Please register here to participate in Social Security’s National Disability Forum, on Compassionate Allowances and Rare Diseases.
The forum will be held on Tuesday, November 7, 2017 from 1:00 p.m. – 3:00 p.m. EST at 1100 New York Avenue, NW, Suite 200 East, Washington, DC 20005. You may also participate in the forum via teleconference in listening mode only.
Compassionate Allowances
The Compassionate Allowances program is a way to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s standards for disability benefits. This forum will focus on gathering research and recommendations for inclusion in our List of Compassionate Allowances Conditions.
Experts and patient organizations in the field of rare and debilitating diseases will share their research and suggestions for new Compassionate Allowances conditions.
Speakers:
Marshall Summar, M.D., Director, Rare Disease Institute, Division Chief, Genetics and Metabolism, Children’s National Health System and Chairman, Board of Directors, National Organization on Rare Diseases (NORD), will moderate the discussion.
Panelists include:
  • Anne Pariser, M.D. – Deputy Director, Office of Rare Disease Research, National Center for Advancing Translational Sciences, National Institutes of Health
  • Eddy Yang, M.D., Ph.D – Professor and Vice-Chair of Radiation Oncology, UAB. Chair of the CCHS Network Research Advisory Board, (Congenital Central Hypoventilation Syndrome)
  • Teryn Suhr – Executive Director and Co-Founder, MLD Foundation (Juvenile Metachromatic Leukodystrophy)
  • Glenna Steele – Executive Director, Glut1 Deficiency Foundation (Glut1 Deficiency)
Join the Online Discussion
We invite your ideas about Compassionate Allowances on our IdeaScale engagement site until Tuesday, November 21. Linked here is our IdeaScale guide.
You can send questions before and during the forum to nationaldisabilityforum@ssa.gov. We also invite you to follow us on Twitter and ask questions during the event. The Twitter handle is @SSAOutreach. Please use #SSANDForum.
We hope you can join us and look forward to your participation.
Sincerely,
Robert W. Patterson
Acting Associate Commissioner
for External Affairs
(T) 410-965-1804
@SSAOutreach

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​info@G1DFoundation.org
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • Share Your Story
      • Materiales en Español
    • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • Conferences
    • 2021 Conference - San Diego
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate