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Oct. 31, 2017

TOPIC: Advocacy, Events

Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

Posted by Lisa Phelps

NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. 7.

The event will provide a platform for rare disease patient advocates and medical experts to suggest diseases for consideration for SSA’s Compassionate Allowances list.

Compassionate Allowances is a way to quickly identify diseases and medical conditions that, by definition, meet SSA’s standards for disability benefits. This initiative helps reduce the waiting time for disability determinations.

NORD has long been an advocate for the Compassionate Allowances Initiative and has supported SSA’s efforts over the years to maintain and expand the initiative.

Everyone can participate in the forum on Nov. 7. It will take place in Washington DC, and those interested in attending as audience members or listening via teleconference may register here. The program will include a Q & A session during which members of the audience may ask questions about the initiative and how to submit diseases for consideration.

SSA will also be accepting questions or comments via Twitter during the forum. Use the hashtag #SSANDForum. The SSA Twitter handle will be @SSAOutreach.

Questions or comments may also be sent directly to SSA at NationalDisabilityForum@ssa.gov. In addition, an IdeaScale web page has been established where diseases or conditions may be submitted to SSA for consideration. Questions or suggestions regarding the CA processes may also be submitted here. The site will be open through Tuesday, Nov. 21.

The Compassionate Allowances Initiative was first announced at a NORD Patient/Family Conference several years ago. Since then, SSA has hosted public hearings and other events to gather information from stakeholders.

It’s also possible to submit diseases for consideration at any time through the SSA website. The conditions currently approved are also listed on the site.

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