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Identified need funds

Patient Advocate Foundation has identified these funds, driven by real patient data, awaiting initial donations to become TotalAssist funds.

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Funds awaiting initial support

In addition to the 150 funds for which we have already officially opened and provided financial assistance to patients, Patient Advocate Foundation has identified the following disease funds through an independent, rigorous research process, including through our case management data. We define our disease funds in accordance with widely recognized clinical standards, specifically using ICD-10 codes to specify the clinical scope and to supplement the definition of a widely recognized disease state. These programs are awaiting initial donations.

Patient Advocate Foundation has sole discretion in identifying new disease funds and is not influenced by, nor do we accept recommendations from donors regarding the design of a disease fund. In addition, we will not create a new disease fund in response to a donor request.

A

  • Abetalipoproteinemia (Bassen-Kornzweig Syndrome)
  • Achondroplasia
  • Actinic Keratosis
  • Addison’s Disease/Adrenal Insufficiency
  • Adrenoleukodystrophy
  • Adult Onset Still’s Disease
  • Adult T-Cell Leukemia/Lymphoma
  • Alagille Syndrome
  • Alcohol Use Disorder
  • Alopecia Areata
  • Alpha-1 Antitrypsin (AAT) Deficiency
  • Alpha-Mannosidosis
  • Alport Syndrome
  • Alzheimer’s Disease
  • Amyotrophic Lateral Sclerosis (ALS)
  • Anal Cancer
  • Anaphylaxis (Acute Reaction Prevention Fund)
  • Anaplastic Large Cell Lymphoma
  • Angelman Syndrome
  • Angioimmunoblastic T-cell Lymphoma
  • Angiosarcoma
  • Antineutrophil Cytoplasmic Antibody (ANCA)-Associated Vasculitis (AAV)
  • Antithrombin Deficiency
  • Anxiety Disorders
  • Aplastic Anemia
  • Aspergillosis Infections
  • Astrocytoma
  • Ataxia-Telangiectasia
  • Atrial Fibrillation and Flutter
  • Attention Deficit Disorder Hyperactivity (ADD/ADHD)
  • Atypical Teratoid/Rhabdoid Tumor (AT/RT)
  • Autism Spectrum Disorder

B

  • Barrett’s Esophagus
  • Barth Syndrome
  • Batten Disease
  • Becker Muscular Dystrophy
  • Behcet’s Syndrome
  • Benign Prostatic Hyperplasia (BPH)
  • Bile Acid Synthesis Disorders
  • Biliary Atresia
  • Binge Eating Disorder
  • Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
  • Blepharitis
  • Bone Metastases
  • Botulism
  • Brain Cancer
  • Bronchiectasis
  • Bronchiolitis Obliterans
  • Bullous Pemphigoid
  • Burkitt Lymphoma

C

  • Calciphylaxis
  • Cancer Related Pain
  • Cancers of the Renal Pelvis and Ureter
  • Carcinoid Syndrome
  • Carcinoid Tumors
  • Cardiac Arrhythmias
  • Cardiomyopathy
  • CDKL5 Disorder
  • Celiac Disease
  • Cell and Gene Therapy Access
  • Cerebrotendinous Xanthomatosis (CTX)
  • Cervical Dystonia (Spasmodic Torticollis)
  • Charcot-Marie-Tooth Disease
  • Chemotherapy Induced Anemia
  • Chemotherapy Induced Nausea & Vomiting
  • Chordoma
  • Chronic Bronchitis
  • Chronic Granulomatous Disease
  • Chronic Iron or Lead Overload
  • Chronic Myeloid or Myelogenous Leukemia
  • Chronic Myelomonocytic Leukemia (CMML)
  • Chronic Pain
  • CIAS1 Associated Periodic Syndromes (CAPS)
  • Cirrhosis
  • Classical Hodgkin Lymphoma Clostridium Difficile-Associated Diarrhea (CDAD)
  • Clostridiodes Difficile Infection
  • Clostridiodes Difficile-Associated Diarrhea (CDAD)
  • CLOVES Syndrome
  • Cluster Headaches
  • Complex Regional Pain Syndrome
  • Congenital Adrenal Hyperplasia
  • Congenital Fibrinogen Deficiency
  • Congenital Hyperinsulinism
  • Congenital Plasminogen Deficiency
  • Congenital Sucrase-isomaltase Deficiency
  • Congenital Varicella Syndrome
  • Coronary Artery Disease (CAD)
  • Cutaneous Squamous Cell Carcinoma
  • Cutaneous T-Cell Lymphoma
  • Cystinosis
  • Cystinuria
  • Cytomegaloviral Infection Treatment and Prevention

D

  • Deep Venous Thrombosis
  • Deficiency of IL-1 Receptor Antagonist (DIRA)
  • Depression/Major Depressive Disorder
  • Dermatitis Herpetiformis
  • Dermatofibrosarcoma Protuberans (DFSP)
  • DiGeorge Syndrome
  • Doose Syndrome
  • Dravet Syndrome
  • Dry Eye Syndrome
  • Dupuytren’s Disease

E

  • Endometriosis
  • Enteropathy-Associated Intestinal T-cell Lymphoma (EATL)
  • Eosinophilic Gastroenteritis
  • Ependymoma
  • Epidermolysis Bullosa
  • Epilepsy
  • Epithelioid Sarcoma
  • Erdheim-Chester Disease
  • Erythrodermic Psoriasis
  • Esophageal Cancer
  • Essential Tremor
  • Ewing’s Sarcoma
  • Exocrine Pancreatic Insufficiency
  • Extranodal Natural Killer/T-cell Lymphoma, Nasal Type

F

  • Factor X Deficiency
  • Fallopian Tube Cancer
  • Familial Chylomicronemia Syndrome
  • Familial Cold Autoinflammatory Syndrome (FCAS)
  • Familial Mediterranean Fever
  • Familiar Mediterranean Fever
  • Fibrodysplasia Ossificans Progressiva
  • Focal Segmental Glomerulosclerosis
  • Fragile X Syndrome
  • Friedreich’s Ataxia

G

  • Galactosemia
  • Gastric (Stomach) Cancer
  • Gastroesophageal Junction Adenocarcinoma
  • Gastroparesis
  • Generalized Anxiety
  • Geographic Atrophy
  • Giant Cell Arteritis
  • Glaucoma
  • Glomerulonephritis
  • Gout
  • Granulomatosis with Polyangiitis (GPA)/Wegener’s Granulomatosis
  • Graves’ Disease
  • Guillain-Barre Syndrome

H

  • Hairy Cell Leukemia
  • Hashimoto’s Disease
  • Head & Neck Cancer
  • Hearing Loss
  • Hemophagocytic Lymphohistiocytosis (HLH)
  • Hepatitis B
  • Hereditary Angioedema
  • Hereditary Xerocytosis
  • Hidradenitis Suppurativa
  • Hodgkin Lymphoma
  • Homocystinuria
  • Human Papillomavirus Infection
  • Huntington’s Disease
  • Hypercalcemia
  • Hypereosinophilic Syndrome (HES)
  • Hyperhidrosis
  • Hyperlipidemia
  • Hyperparathyroidism
  • Hyperphosphatemia
  • Hypertension
  • Hypertriglyceridemia
  • Hypogonadism
  • Hypoparathyroidism
  • Hypophosphatemia

I

  • Idiopathic Hypersomnia
  • Idiopathic Intracranial Hypertension
  • Idiopathic Thrombocytopenic Purpura
  • IgA Nephropathy
  • Immunoglobulin G4-related Disease
  • Inclusion Body Myositis
  • Infantile Neuroaxonal Dystrophy (INAD)
  • Inflammatory Myofibroblastic Tumor (IMT)
  • Inherited Icthyoses
  • Interstitial Cystitis
  • Interstitial Lung Disease
  • Interstitial Lung Disease associated with Systemic Sclerosis or Scleroderma
  • Iron Deficiency Anemia
  • Irritable Bowel Syndrome

J

  • Juvenile Idiopathic Arthritis

K

  • Kaposi’s Sarcoma
  • Krabbe Disease

L

  • Lambert-Eaton Myasthenic Syndrome
  • Leber’s Hereditary Optic Neuropathy
  • Legionnaires’ Disease
  • Leiomyosarcoma
  • Lennox-Gastaut Syndrome
  • Leprosy
  • Lewy Body Dementia
  • Lichen Planus
  • Limb-Girdle Muscular Dystrophy
  • Lipedema
  • Liposarcoma
  • Long QT Syndrome
  • Lyme Disease
  • Lymphangioleiomyomatosis (LAM)

M

  • Mannose Phosphate Isomerase Deficiency
  • Marginal Zone Lymphomas
  • Mast Cell Activation Disorders
  • Mastocytosis
  • Menkes Disease
  • Merkel Cell Carcinoma
  • Mesothelioma
  • Methicillin-Resistant Staphylococcus Aureus (MRSA)
  • Methylmalonic Acidemia
  • Microscopic Polyangiitis (MPA)
  • Migraine
  • Minimal Change Disease (MCD)
  • Molybdenum Cofactor Deficiency
  • Muckle-Wells Syndrome (MWS)
  • Mucopolysaccharidosis Type I (Hurler, Hurler-Scheie and Scheie Syndrome)
  • Mucopolysaccharidosis Type II (Hunter Syndrome)
  • Mucopolysaccharidosis Type IV (Morquio Syndrome)
  • Mucopolysaccharidosis Type VI (Maroteaux-Lamy Syndrome)
  • Multifocal Motor Neuropathy
  • Multiple System Atrophy (MSA)
  • Muscular Dystrophy
  • Myeloproliferative Disorders

N

  • Neonatal Onset Multisystem Inflammatory Disease (NOMID)
  • Netherton Syndrome
  • Neuroblastoma
  • Neurocognitive Disease with Psychosis
  • Neuroendocrine Tumors
  • Neuroendocrine Tumors of GI Tract
  • Neuroendocrine Tumors of Lungs
  • Neuroendocrine Tumors of Pancreatic Origin
  • Neuronal Ceroid Lipofuscinoses
  • Nicotine Addiction
  • Niemann-Pick Disease
  • Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
  • Non-Arteric Ischemic Anterior Optic Neuropathy
  • Non-Radiographic Axial Spondyloarthritis (nr-axSpA)
  • Nontuberculous Mycobacterial Infections

O

  • Obsessive Compulsive Disorders
  • Obstructive Sleep Apnea (OSA)
  • Ohtahara Syndrome
  • Oligodendroglioma
  • Oncology Clinical Trial Access
  • Open Angle Glaucoma
  • Opioid Use Disorder
  • Osteoarthritis
  • Osteosarcoma
  • Overactive Bladder

P

  • Pachyonychia Congenita
  • Paget’s Disease
  • Panayiotopoulos Syndrome (Childhood Autonomic Epilepsy)
  • Pantothenate Kinase-Associated Neurodegeneration
  • Paraganglioma & Pheochromocytoma
  • Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)
  • Pediatric Glioma
  • Periodontitis
  • Pernicious Anemia
  • Peyronie’s Disease
  • Phenylketonuria (PKU)
  • Pheochromocytoma and Paraganglioma Polycystic Kidney Disease (PKD)
  • Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia
  • Plaque Psoriasis
  • Polycystic Ovary Syndrome (PCOS)
  • Polymyalgia Rheumatica
  • Polymyositis & Dermatomyositis
  • Porphyria
  • Post-Partum Depression
  • Post-Transplant Lymphoproliferative Disorders
  • Post-Traumatic Stress Disorder
  • Postmenopausal Osteoporosis
  • Pouchitis
  • Prader-Willi Syndrome
  • Premenstrual Dysphoric Disorder (PMDD)
  • Primary Biliary Cholangitis
  • Primary Hyperoxaluria
  • Primary Hyperparathyroidism
  • Primary Immunodeficiency Diseases (PIDD)
  • Primary Mitochondrial Myopathy
  • Progeria
  • Progressive Familial Intrahepatic Cholestasis (PFIC)
  • Propionic Acidemia
  • Protein C Deficiency
  • Prurigo Nodularis
  • Pulmonary Alveolar Proteinosis
  • Pulmonary Embolism
  • Pustular Psoriasis
  • Pyruvate Dehydrogenase Complex Deficiency
  • Pyruvate Kinase Deficiency

R

  • Relapsed & Refractory Acute Lymphoblastic Leukemia
  • Relapsed & Refractory Diffuse Large B-Cell Lymphoma
  • Respiratory Synctial Virus
  • Retinopathy of Prematurity
  • Rhabdomyosarcoma
  • Rosacea

S

  • Sarcoidosis
  • Sarcoma of the Bone
  • Scleroderma
  • Seasonal Affective Disorder
  • Secondary Hyperoxaluria
  • Secondary Hyperparathyroidism
  • Severe Combined Immunodeficiency Disease (SCID)
  • Shingles Treatment and Prevention
  • Sjögren’s Syndrome
  • Smith-Magenis Syndrome
  • Social Anxiety Disorder
  • Soft Tissue Sarcoma
  • Spasticity
  • Spinocerebellar Ataxia
  • Stargardt Disease
  • Synovial Sarcoma
  • Syphilis
  • Systemic Mastocytosis
  • Systemic Sclerosis (Scleroderma)

T

  • Tardive Dyskinesia
  • Tay-Sachs Disease
  • Tenosynovial Giant Cell Tumor (TGCT)
  • Testicular Cancer
  • Thalassemia
  • Thrombocytopenia
  • Tourette’s Syndrome
  • Trigeminal Neuralgia
  • Tuberculosis
  • Tuberous Sclerosis Complex
  • Turner’s Syndrome
  • Type 1 Diabetes

U

  • Urea Cycle Disorders
  • Urticaria
  • Uterine Fibroids

V

  • Vaginal Atrophy
  • Vascular Ehlers-Danlos Syndrome (vEDS)
  • Veno-Occlusive Disease (VOD)
  • Venous Leg Ulcers
  • Ventricular Fibrillation and Flutter
  • Virology Testing Fund
  • Von Hippel-Lindau (VHL) Disease
  • Vulvar Cancer

W

  • West Syndrome
  • WHIM Syndrome
  • Wilms Tumor

X

  • X-Linked Agammaglobulinemia (XLA)
  • X-Linked Hypophosphatemia
  • Xeroderma Pigmentosum

Z

  • Zellweger Spectrum Disorders
  • Zollinger-Ellison Syndrome