The Social Security Administration has recently announced an expansion of its Compassionate Allowances List (CAL) to include nine additional rare disease populations, including adults with Duchenne Muscular Dystrophy, Charlevoix Saguenay Spastic Ataxia (ARSACS), Choroid Plexus Carcinoma, Congenital Zika Syndrome, Refractory Hodgkin Lymphoma, Renpenning Syndrome, SCN8A Related Epilepsy with Encephalopathy, SYNGAP1-related NSID, and Taybi-Linder Syndrome.

Many individuals in the rare disease community rely on financial support like Social Security Disability Insurance (SSDI) benefits offer. However, the program has strict standards for what is considered a disability. As such, those with rare diseases – whose conditions may be relatively unknown – often struggle to qualify for SSDI benefits. The CAL is a designation program within the SSDI that expedites this process for (as of now) 254 severe conditions that clearly meet the requirements to receive SSDI benefits. 

In a news release, CureDuchenne noted that instead of “waiting months or years to get records submitted and approved, or even having to explain what Duchenne is to a government agency, individuals living with Duchenne who are over the age of 18 can now get disability benefits approved faster and easier.”

To learn more about submitting a disease to this program, click here.

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