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Social Security Compassionate Allowance Conditions - Current List

  • Published: 2009-02-24 (Revised/Updated 2017-09-07) : Author: Disabled World : Contact: Disabled World
  • Synopsis: Compassionate allowance benefits are for diseases and other medical conditions that invariably qualify under the listing of impairments.

Quote: "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."

Main Document

Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information.

A way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income disability benefits. It 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. However, there remains a five month waiting period after your onset date to receive SSDI benefits - and for most conditions a claimant will have to wait 24 months from the date of disability to receive Medicare medical benefits.

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.

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.

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.

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.

This program is just a start. 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 which follows will expand over time.

Current List of Compassionate Allowance Conditions
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
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
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
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
Degos Disease
DeSanctis Cacchione Syndrome
Dravet Syndrome
Ependymoblastoma (Child Brain Tumor)
Esophageal Cancer
Early-Onset Alzheimer's Disease
Edwards Syndrome
Eisenmenger Syndrome
Endomyocardial Fibrosis
Ewings Sarcoma
Endometrial Stromal Sarcoma
Erdheim Chester Disease
Farber's Disease (FD) - Infantile
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
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
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
Hutchinson-Gilford Progeria Syndrome
Hypocomplementemic Urticarial Vasculitis
Hypophosphatasia Perinatal lethal Form
Hepatopulmonary Syndrome
Hepatorenal Syndrome
Infantile Neuroaxonal Dystrophy (INAD)
Inflammatory Breast Cancer (IBC)
Idiopathic Pulmonary Fibrosis
I Cell disease
Intracranial Hemangiopericytoma
Infantile Free Sialic Acid Storage Disease
Junctional Epidermolysis Bullosa, Lethal Type
Juvenile Onset Huntington Disease
Joubert Syndrome
Jervell and Lange-Nielsen Syndrome
Kidney Cancer - inoperable or unresectable
Kleefstra Syndrome
Krabbe Disease (KD) - Infantile
Kufs Disease Type A and B
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
Leptomeningeal Carcinomatosis
Liposarcoma- metastatic or recurrent
Lymphomatoid Granulomatosis Grade III
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
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
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
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
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
Rett Syndrome
Retinopathy of Prematurity - Stage V
Roberts Syndrome
Revesz Syndrome
Rhizomelic Chondrodysplasia Punctata
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
Tabes Dorsalis
Thyroid Cancer
Tay Sachs Disease
Thanatophoric Dysplasia, Type 1
Tricuspid Atresia
Transplant Coronary Artery Vasculopathy
Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent
Ullrich Congenital Muscular Dystrophy
Usher Syndrome - Type I
Vanishing White Matter Disease (CACH) - Infantile and Childhood Onset Forms
Walker Warburg Syndrome
Wolman Disease
Wolf-Hirschhorn Syndrome
Xeroderma Pigmentosum
X-Linked Lymphoproliferative Disease
X-Linked Myotubular Myopathy
Zellweger Syndrome

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

Facts: Compassionate Allowance Information &

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