CAL Conditions

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Acute Leukemia

Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent

Adult Non-Hodgkin Lymphoma

Adult Onset Huntington Disease

Aicardi-Goutieres Syndrome

Alexander Disease (ALX) - Neonatal and Infantile

Allan-Herndon-Dudley Syndrome
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Alobar Holoprosencephaly


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ALS/Parkinsonism Dementia Complex

Alstrom Syndrome

Alveolar Soft Part Sarcoma

Amegakaryocytic Thrombocytopenia

Amyotrophic Lateral Sclerosis (ALS)

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Angelman Syndrome


Aortic Atresia
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Aplastic Anemia

Astrocytoma - Grade III and IV

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Atypical Teratoid/Rhabdoid Tumor

Batten Disease

Beta Thalassemia Major

Bilateral Optic Atrophy- Infantile

Bilateral Retinoblastoma

Bladder Cancer - with distant metastases or inoperable or unresectable

Breast Cancer - with distant metastases or inoperable or unresectable

Canavan Disease (CD)

CACH--Vanishing White Matter Disease-Infantile and Childhood Onset Forms

Carcinoma of Unknown Primary Site

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Cerebro Oculo Facio Skeletal (COFS) Syndrome

Cerebrotendinous Xanthomatosis

Child Lymphoblastic Lymphoma

Child Lymphoma

Child Neuroblastoma - with distant metastases or recurrent

Chondrosarcoma - with multimodal therapy

Chronic Idiopathic Intestinal Pseudo Obstruction

Chronic Myelogenous Leukemia (CML) - Blast Phase

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Congenital Lymphedema

Congenital Myotonic Dystrophy

Cornelia de Lange Syndrome - Classic Form

Corticobasal Degeneration

Creutzfeldt-Jakob Disease (CJD) – Adult

Cri du Chat Syndrome

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DeSanctis Cacchione Syndrome

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Early-Onset Alzheimer’s Disease

Edwards Syndrome (Trisomy 18)

Eisenmenger Syndrome

Endometrial Stromal Sarcoma

Endomyocardial Fibrosis

Ependymoblastoma (Child Brain Cancer)

Erdheim Chester Disease

Esophageal Cancer


Ewing Sarcoma

Farber Disease (FD) – Infantile

Fatal Familial Insomnia

Fibrodysplasia Ossificans Progressiva

Fibrolamellar Cancer (Effective 8/20/2018)

Follicular Dendritic Cell Sarcoma - metastatic or recurrent

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Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult

Fryns Syndrome
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Fucosidosis - Type 1

Fukuyama Congenital Muscular Dystrophy

Fulminant Giant Cell Myocarditis

Galactosialidosis - Early and Late Infantile Types

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Gallbladder Cancer

Gaucher Disease (GD) - Type 2

Giant Axonal Neuropathy

Glioblastoma Multiforme (Brain Cancer)

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Glioma Grade III and IV

Glutaric Acidemia - Type II

Head and Neck Cancers - with distant metastasis or inoperable or unresectable

Heart Transplant Graft Failure
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Heart Transplant Wait List - 1A/1B

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Hemophagocytic Lymphohistiocytosis (HLH) - Familial Type


Hepatopulmonary Syndrome

Hepatorenal Syndrome

Histiocytosis Syndromes

Hoyeaal-Hreidarsson Syndrome

Hutchinson-Gilford Progeria Syndrome


Hypocomplementemic Urticarial Vasculitis Syndrome

Hypophosphatasia Perinatal (Lethal) and Infantile Onset Types

Hypoplastic Left Heart Syndrome

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Idiopathic Pulmonary Fibrosis

Infantile Free Sialic Acid Storage Disease

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Infantile Neuronal Ceroid Lipofuscinoses

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Inflammatory Breast Cancer (IBC)

Intracranial Hemangiopericytoma

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Junctional Epidermolysis Bullosa - Lethal Type

Juvenile Onset Huntington Disease

Kidney Cancer - inoperable or unresectable

Kleefstra Syndrome

Krabbe Disease (KD) – Infantile

Kufs Disease - Type A and B

Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent>

Late Infantile Neuronal Ceroid Lipofuscinoses

Leigh’s Disease


Leptomeningeal Carcinomatosis

Lesch-Nyhan Syndrome (LNS)

Lewy Body Dementia

Liposarcoma - metastatic or recurrent

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Liver Cancer

Lowe Syndrome

Lymphomatoid Granulomatosis - Grade III

Malignant Brain Stem Gliomas – Childhood

Malignant Ectomesenchymoma

Malignant Gastrointestinal Stromal Tumor
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Malignant Germ Cell Tumor

Malignant Multiple Sclerosis

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Mantle Cell Lymphoma (MCL)

Maple Syrup Urine Disease

Marshall-Smith Syndrome

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MECP2 Duplication Syndrome

Medulloblastoma - with metastases

Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (Effective 8/20/2018)

Megalencephaly Capillary Malformation Syndrome (Effective 8/20/2018)
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Menkes Disease - Classic or Infantile Onset Form

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Merosin Deficient Congenital Muscular Dystrophy

Metachromatic Leukodystrophy (MLD) - Late Infantile

Mitral Valve Atresia

Mixed Dementias

MPS I, formerly known as Hurler Syndrome

MPS II, formerly known as Hunter Syndrome

MPS III, formerly known as Sanfilippo Syndrome

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Mucosal Malignant Melanoma

Multicentric Castleman Disease

Multiple System Atrophy

Myoclonic Epilepsy with Ragged Red Fibers Syndrome

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Nephrogenic Systemic Fibrosis

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NFU-1 Mitochondrial Disease

Niemann-Pick Disease (NPD) - Type A

Niemann-Pick Disease-Type C

Nonketotic Hyperglycinemia

Non-Small Cell Lung Cancer

Obliterative Bronchiolitis

Ohtahara Syndrome

Oligodendroglioma Brain Cancer- Grade III

Ornithine Transcarbamylase (OTC) Deficiency

Orthochromatic Leukodystrophy with Pigmented Glia

Osteogenesis Imperfecta (OI) - Type II

Osteosarcoma, formerly known as Bone Cancer - with distant metastases or inoperable or unresectable

Ovarian Cancer – with distant metastases or inoperable or unresectable

Pallister-Killian Syndrome

Pancreatic Cancer

Paraneoplastic Pemphigus

Patau Syndrome (Trisomy 13)

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Pearson Syndrome

Pelizaeus-Merzbacher Disease-Classic Form

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Peripheral Nerve Cancer - metastatic or recurrent

Peritoneal Mesothelioma

Peritoneal Mucinous Carcinomatosis

Perry Syndrome

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Pleural Mesothelioma

Pompe Disease – Infantile

Primary Central Nervous System Lymphoma

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Primary Effusion Lymphoma

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Progressive Supranuclear Palsy

Prostate Cancer - Hormone Refractory Disease – or with visceral metastases

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Pulmonary Kaposi Sarcoma

Retinopathy of Prematurity - Stage V

Rett (RTT) Syndrome

Revesz Syndrome

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Rhizomelic Chondrodysplasia Punctata

Roberts Syndrome

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Sandhoff Disease

Schindler Disease - Type 1

Seckel Syndrome

Severe Combined Immunodeficiency - Childhood

Single Ventricle

Sinonasal Cancer

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Skin Malignant Melanoma with Metastases

Small Cell Cancer (Large Intestine, Prostate or Thymus)

Small Cell Cancer of the Female Genital Tract

Small Cell Lung Cancer

Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent
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Smith Lemli Opitz Syndrome

Soft Tissue Sarcoma - with distant metastases or recurrent

Spinal Muscular Atrophy (SMA) - Types 0 and 1

Spinal Nerve Root Cancer-metastatic or recurrent

Spinocerebellar Ataxia

Stiff Person Syndrome

Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent

Subacute Sclerosing Panencephalitis

Superficial Siderosis of the Central Nervous System (Effective 8/20/2018)

Tabes Dorsalis

Tay Sachs Disease - Infantile Type

Tetrasomy 18p (Effective 8/20/2018)

Thanatophoric Dysplasia - Type 1

Thyroid Cancer
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Transplant Coronary Artery Vasculopathy

Tricuspid Atresia

Ullrich Congenital Muscular Dystrophy

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Usher Syndrome - Type I

Ventricular Assist Device Recipient - Left, Right, or Biventricular

Walker Warburg Syndrome

Wolf-Hirschhorn Syndrome

Wolman Disease

X-Linked Lymphoproliferative Disease

X-Linked Myotubular Myopathy

Xeroderma Pigmentosum

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Contact the Compassionate Allowances Team