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 www.socialsecurity.gov/compassionateallowances.
