A Rare Lysosomal Storage Disease

Social Security Adds 38 New Medical Conditions that Qualify for Disability

Social Security Adds 38 New Medical Conditions that Qualify for Disability


Social Security adds 38 new medical conditions that qualify for disability help.  The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children which includes Niemann-Pick Type C!

Personally this seems like a relief for so many families. One of the goals of the Niemann-Pick Children's Fund is how can we directly impact families especially with this kind of disease. That of course is a huge task that seems daunting at times. There are so many other rare diseases out there that are equally devastating besides NPC. It is heart wrenching to know that there are so few options.

Approximately 15 million Americans have rare diseases for which there still is no approved treatment and no research in progress. What that tells us is that leaves a lot of families carrying a burden of hopelessness!

Here is a snippet from the article: read more here

This is the first expansion since the original list of 50 conditions – 25 rare diseases and 25 cancers – was announced in October 2008, according to the announcement yesterday by Michael J. Astrue, Commissioner of Social Security.

The complete list of the newly recognized medical conditions that clearly qualify patients for Social Security and Supplemental Security Income disability benefits – Compassionate Allowance conditions – is below.

“The addition of these new conditions expands the scope of Compassionate Allowances to a broader subgroup of conditions like early-onset Alzheimer’s disease,” Commissioner Astrue said.

“The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.”

The quick identification of these conditions allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals.

In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health, the Alzheimer’s Association, the National Organization for Rare Disorders, and other groups.

“The diagnosis of Alzheimer's indicates significant cognitive impairment that interferes with daily living activities, including the ability to work,” said Harry Johns, President and CEO of the Alzheimer's Association.

New Compassionate Allowance Conditions

1.                  Alstrom Syndrome

2.                  Amegakaryocytic Thrombocytopenia

3.                  Ataxia Spinocerebellar

4.                  Ataxia Telangiectasia

5.                  Batten Disease

6.                  Bilateral Retinoblastoma

7.                  Cri du Chat Syndrome

8.                  Degos Disease

9.                  Early-Onset Alzheimer’s Disease

10.              Edwards Syndrome

11.              Fibrodysplasia Ossificans Progressiva

12.              Fukuyama Congenital Muscular Dystrophy

13.              Glutaric Acidemia Type II

14.              Hemophagocytic Lymphohistiocytosis (HLH), Familial Type

15.              Hurler Syndrome, Type IH

16.              Hunter Syndrome, Type II

17.              Idiopathic Pulmonary Fibrosis

18.              Junctional Epidermolysis Bullosa, Lethal Type

19.              Late Infantile Neuronal Ceroid Lipofuscinoses

20.              Leigh’s Disease

21.              Maple Syrup Urine Disease

22.              Merosin Deficient Congenital Muscular Dystrophy

23.              Mixed Dementia

24.              Mucosal Malignant Melanoma

25.              Neonatal Adrenoleukodystrophy

26.              Neuronal Ceroid Lipofuscinoses, Infantile Type

27.              Niemann-Pick Type C

28.              Patau Syndrome

29.              Primary Progressive Aphasia

30.              Progressive Multifocal Leukoencephalopathy

31.              Sanfilippo Syndrome

32.              Subacute Sclerosis Panencephalitis

33.              Tay Sachs Disease

34.              Thanatophoric Dysplasia, Type 1

35.              Ullrich Congenital Muscular Dystrophy

36.              Walker Warburg Syndrome

37.              Wolman Disease

38.              Zellweger Syndrome

For more information about the agency’s Compassionate Allowances initiative, go to

The new conditions range from early-onset Alzheimer’s disease to rare diseases that primarily affect children.

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