Synopsis:
Compassionate allowance benefits are for diseases and other medical conditions that invariably qualify under the listing of impairments.
Compassionate allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits.
The compassionate allowances list allows the agency to electronically target and make speedy decisions for the most obviously disabled individuals. If a claimant has a condition on the Compassionate Allowance list the SSA will approve their disability in as little as 10 days, with limited medical information which proves their diagnosis.
Many people with rare diseases encounter delays of months or even years when they apply for assistance through SSA. Compassionate allowances will allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
Often, people with rare diseases initially are denied assistance but later reapply, often with the help of an attorney, and ultimately are approved. The delay and expense of attorney fees can be overwhelming to people who are already coping with serious illness, major medical expenses, and loss of ability to perform normal activities, including work.
U.S. Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. The Compassionate Allowance initiative will fast-track applications for social Security disability for applicants whose medical conditions are very severe. Currently, many people with rare diseases experience devastating delays when they apply for social Security assistance because those making the decisions are not familiar with their diseases.
The initial list of Compassionate Allowance conditions was developed as a result of information received at public outreach hearings, public comment on an Advance Notice of Proposed Rule-making, comments received from the Social Security and Disability Determination Service communities, and the counsel of medical and scientific experts. Also, we considered which conditions are most likely to meet our current definition of disability.
There are 6,000 to 7,000 known rare diseases, many of which could qualify for compassionate allowance.
NORD is committed to working with SSA to bring many more rare diseases under this program.
The list below will be expanded over time as more fast track medical conditions are approved.
| List of U.S. Social Security Compassionate Allowance Conditions |
|---|
| A |
| Adult Non-Hodgkin Lymphoma |
| Adult Onset Huntington Disease |
| Allan-Herndon-Dudley Syndrome |
| Alveolar Soft Part Sarcoma |
| Aplastic Anemia |
| Aicardi-Goutieres Syndrome |
| Alobar Holoprosencephaly |
| Alpers Disease |
| Alpha Mannosidosis |
| ALS/Parkinsonism Dementia Complex |
| Angiosarcoma |
| Aortic Atresia |
| Alstrom Syndrome |
| Acute Leukemia |
| Adrenal Cancer - with distant metastases or inoperable, un-resectable or recurrent |
| Alexander Disease (ALX) - Neonatal and Infantile |
| Amyotrophic Lateral Sclerosis (ALS) |
| Anaplastic Adrenal Cancer - with distant metastases or inoperable, un-resectable or recurrent |
| Astrocytoma - Grade III and IV |
| Amegakaryocytic Thrombocytopenia |
| Ataxia Spinocerebellar |
| Ataxia Telangiectasia |
| Atypical Teratoid/Rhabdoid Tumor |
| Angelman Syndrome |
| B |
| Beta Thalassemia Major |
| Bilateral Optic Atrophy- Infantile |
| Bladder Cancer - with distant metastases or inoperable or un-resectable |
| Bone Cancer - with distant metastases or inoperable or un-resectable |
| Breast Cancer - with distant metastases or inoperable or un-resectable |
| Batten Disease |
| Bilateral Retinoblastoma |
| C |
| Caudal Regression Syndrome - Types III and IV |
| Child T-Cell Lymphoblastic Lymphoma |
| Chronic Idiopathic Intestinal Pseudo Obstruction |
| Coffin- Lowry Syndrome |
| Congenital Lymphedema |
| Cri du Chat Syndrome |
| Canavan Disease (CD) |
| Cerebro Oculo Facio Skeletal (COFS) Syndrome |
| Chronic Myelogenous Leukemia (CML) - Blast Phase |
| Creutzfeldt-Jakob Disease (CJD) - Adult |
| Corticobasal Degeneration |
| Carcinoma of Unknown Primary Site |
| Cerebrotendinous Xanthomatosis |
| Child Neuroblastoma |
| Child Non-Hodgkin Lymphoma |
| Chondrosarcoma with multimodal therapy |
| Congenital Myotonic Dystrophy |
| Cornelia de Lange Syndrome-Classic Form |
| D |
| Degos Disease |
| DeSanctis Cacchione Syndrome |
| Dravet Syndrome |
| E |
| Ependymoblastoma (Child Brain Tumor) |
| Esophageal Cancer |
| Early-Onset Alzheimer's Disease |
| Edwards Syndrome |
| Eisenmenger Syndrome |
| Endomyocardial Fibrosis |
| Esthesioneuroblastoma |
| Ewings Sarcoma |
| Endometrial Stromal Sarcoma |
| Erdheim Chester Disease |
| F |
| Farber's Disease (FD) - Infantile |
| Fibrolamellar Cancer |
| Friedreichs Ataxia (FRDA) |
| Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult |
| Fibrodysplasia Ossificans Progressiva |
| Fukuyama Congenital Muscular Dystrophy |
| Follicular Dendritic Cell Sarcoma with metastases |
| Fucosidosis - Type 1 |
| Fatal Familial Insomnia |
| Fryns Syndrome |
| Fulminant Giant Cell Myocrditis |
| G |
| Gallbladder Cancer |
| Gaucher Disease (GD) - Type 2 |
| Glioblastoma Multiforme (Brain Tumor) |
| Glutaric Acidemia Type II |
| Galactosialidosis - Early Infantile Type |
| Glioma Grade III and IV |
| Giant Axonal Neuropathy |
| H |
| Head and Neck Cancers - with distant metastasis or inoperable or uresectable |
| Hemophagocytic Lymphohistiocytosis (HLH), Familial Type |
| Hurler Syndrome, Type IH |
| Hunter Syndrome, Type II |
| Heart Transplant Graft Failure |
| Heart Transplant Wait List - 1A/1B |
| Hoyeaal-Hreidarsson Syndrome |
| Hypoplastic Left Heart Syndrome |
| Hallervorden-Spatz Disease |
| Hepatoblastoma |
| Histiocytosis |
| Hutchinson-Gilford Progeria Syndrome |
| Hydranencephaly |
| Hypocomplementemic Urticarial Vasculitis |
| Hypophosphatasia Perinatal lethal Form |
| Hepatopulmonary Syndrome |
| Hepatorenal Syndrome |
| I |
| Infantile Neuroaxonal Dystrophy (INAD) |
| Inflammatory Breast Cancer (IBC) |
| Idiopathic Pulmonary Fibrosis |
| I Cell disease |
| Intracranial Hemangiopericytoma |
| Infantile Free Sialic Acid Storage Disease |
| J |
| Junctional Epidermolysis Bullosa, Lethal Type |
| Juvenile Onset Huntington Disease |
| Joubert Syndrome |
| Jervell and Lange-Nielsen Syndrome |
| K |
| Kidney Cancer - inoperable or unresectable |
| Kleefstra Syndrome |
| Krabbe Disease (KD) - Infantile |
| Kufs Disease Type A and B |
| L |
| Lewy Body Dementia |
| Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent |
| Lesch-Nyhan Syndrome (LNS) |
| Liver Cancer |
| Late Infantile Neuronal Ceroid Lipofuscinoses |
| Leigh's Disease |
| Left Ventricular Assist Device (LVAD) Recipient |
| Lowe Syndrome |
| Lissencephaly |
| Leptomeningeal Carcinomatosis |
| Liposarcoma- metastatic or recurrent |
| Lymphomatoid Granulomatosis Grade III |
| Leiomyosarcoma |
| M |
| Mantle Cell Lymphoma (MCL) |
| Metachromatic Leukodystrophy (MLD) - Late Infantile |
| Maple Syrup Urine Disease |
| Merosin Deficient Congenital Muscular Dystrophy |
| Mixed Dementia |
| Mucosal Malignant Melanoma |
| Mitral Valve Atresia |
| Multicentric Castleman Disease |
| Malignant Multiple Sclerosis |
| Multiple System Atrophy |
| Malignant Gastrointestinal Stromal Tumor |
| Malignant Germ Cell Tumor |
| MECP 2 Duplication Syndrome |
| Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS) |
| Megalencephaly Capillary Malformation Syndrome (MCAP) |
| Menkes Disease - Classic or Infantile Onset Form |
| Malignant Brain Stem Gliomas - Childhood |
| Malignant Ectomesenchymoma |
| Malignant Renal Rhabdoid Tumor |
| Marshall-Smith Syndrome |
| Malignant Melanoma with metastases |
| Mastocytosis Type IV |
| Medulloblastoma with metastasis |
| Merkel Cell Carcinoma with metastases |
| Myocolonic Epilepsy and Ragged Red Fibers Syndrome |
| N |
| Niemann-Pick Disease (NPD) - Type A |
| Non-Small Cell Lung Cancer - with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent |
| Neonatal Adrenoleukodystrophy |
| Neuronal Ceroid Lipofuscinoses, Infantile Type |
| Niemann-Pick Type C |
| NFU-1 Mitochondrial Disease |
| Non-Ketotic Hyperglcinemia |
| Nephrogenic Systemic Fibrosis |
| O |
| Ornithine Transcarbamylase (OTC) Deficiency |
| Osteogenesis Imperfecta (OI) - Type II |
| Ovarian Cancer - with distant metastases or inoperable or unresectable |
| Obliterative Bronchiolitis |
| Oligodendroglioma Brain Tumor- Grade III |
| Ohtahara Syndrome |
| Orthochromatic Leukodystrophy with Pigmented Glia |
| P |
| Pancreatic Cancer |
| Peritoneal Mesothelioma |
| Pleural Mesothelioma |
| Pompe Disease - Infantile |
| Patau Syndrome |
| Primary Progressive Aphasia |
| Progressive Multifocal Leukoencephalopathy |
| Primary Cardiac Amyloidosis |
| Pulmonary Atresia |
| Paraneoplastic Pemphigus |
| Pallister-Killian Syndrome |
| Progressive Bulbar Palsy |
| Prostate Cancer - Hormone Refractory Disease - or with visceral metastases |
| Pulmonary Kaposi Sarcoma |
| Primary Effusion Lymphoma |
| Progressive Supranuclear Palsy |
| Primary Central Nervous System Lymphoma |
| Peritoneal Mucinous Carcinomatosis |
| Phelan- McDermid Syndrome |
| Pearson Syndrome |
| Pelizaeus-Merzbacher Disease-Classic Form |
| Pelizaeus-Merzbacher Disease-Connatal Form |
| Peripheral Nerve Cancer - metastatic or recurrent |
| Perry Syndrome |
| R |
| Rett Syndrome |
| Retinopathy of Prematurity - Stage V |
| Roberts Syndrome |
| Revesz Syndrome |
| Rhabdomyosarcoma |
| Rhizomelic Chondrodysplasia Punctata |
| S |
| Salivary Tumors |
| Sandhoff Disease |
| Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus) |
| Small Cell Lung Cancer |
| Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent |
| Spinal Muscular Atrophy (SMA) - Types 0 And 1 |
| Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent |
| Sanfilippo Syndrome |
| Subacute Sclerosis Panencephalitis |
| Single Ventricle |
| Severe Combined Immunodeficiency - Childhood |
| Seckel Syndrome |
| Sjogren-Larsson Syndrome |
| Small Cell Cancer of the Thymus |
| Soft Tissue Sarcoma- with distant metastases or recurrent |
| Sinonasal Cancer |
| Schindler Disease Type 1 |
| Smith Lemli Opitz Syndrome |
| Spinal Nerve Root Cancer- metastatic or recurrent |
| Stiff Person Syndrome |
| T |
| Tabes Dorsalis |
| Thyroid Cancer |
| Tay Sachs Disease |
| Thanatophoric Dysplasia, Type 1 |
| Tetrasomy 18p |
| Tricuspid Atresia |
| Transplant Coronary Artery Vasculopathy |
| U |
| Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent |
| Ullrich Congenital Muscular Dystrophy |
| Usher Syndrome - Type I |
| V |
| Vanishing White Matter Disease (CACH) - Infantile and Childhood Onset Forms |
| W |
| Walker Warburg Syndrome |
| Wolman Disease |
| Wolf-Hirschhorn Syndrome |
| X |
| Xeroderma Pigmentosum |
| X-Linked Lymphoproliferative Disease |
| X-Linked Myotubular Myopathy |
| Z |
| Zellweger Syndrome |
For more information about the program, including a current up to date list of all compassionate allowance conditions, please visit www.socialsecurity.gov/compassionateallowances
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