Help and Hope for the Glut1 Deficiency Community


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.





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.


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 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.


Robert W. Patterson
Acting Associate Commissioner
for External Affairs
(T) 410-965-1804