NHLBI-Related Public Interest Organizations

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Organizations Focusing on Cardiovascular Diseases

Adult Congenital Heart Association

American Heart Association

Children's Cardiomyopathy Foundation

CFC International (cardio-facio-cutaneous syndrome)

Churg Strauss Syndrome Association

Children's Heart Foundation

HELLP Syndrome Society, Inc.

Congenital Heart Information Network (C.H.I.N.)

Kawasaki Disease Foundation

Kids With Heart

Mended Hearts, Inc.

National Stroke Association

Parent Heart Watch

Preeclampsia Foundation

Sudden Arrhythmia Death Syndromes (SADS) Foundation

Sudden Cardiac Arrest Association

Sudden Cardiac Arrest Foundation

Vascular Disease Foundation

WomenHeart: the National Coalition for Women with Heart Disease


Organizations Focusing on Lung Diseases

Allergy and Asthma Network - Mothers of Asthmatics, Inc.

Alpha 1 Advocacy Alliance

Alpha 1 Association

Alpha 1 Foundation

American Association for Respiratory Care (AARC) Consumer Roundtable

American Lung Association

ARDS Foundation (acute respiratory distress syndrome)

Asthma and Allergy Foundation of America

Central Indiana Sarcoidosis Support Group

Children's Interstitial Lung Disease (ChILD) Foundation

Coalition for Pulmonary Fibrosis

COPD Foundation (chronic obstructive pulmonary disease)

COPD International (chronic obstructive pulmonary disease)

COPD-Alert (chronic obstructive pulmonary disease)

Cystic Fibrosis Foundation

Emphysema Foundation for our Right to Survive (EFFORTS)

Foundation for Sarcoidosis Research

LAM Foundation (lymphangioleiomyomatosis)

LAM Treatment Alliance (lymphangioleiomyomatosis)

Let's Breath Sarcoidosis Support

National Emphysema/COPD Association (NECA)

National Sarcoidosis Networking Society

National Sarcoidosis Resource Center

Nontuberculous Mycobacteria Information and Research, Inc.

PCD Foundation (primary ciliary dyskinesia)

Pulmonary Fibrosis Foundation

Pulmonary Hypertension Association, Inc.

Sarcoid Networking Association

Sarcoidosis Awareness Network

Sarcoidosis Network Foundation, Inc.

Sarcoidosis of the Midlands of South Carolina

Sarcoidosis Research Institute

Sarcoidosis Research Support Group


Organizations Focusing on Blood Diseases and Resources

Aplastic Anemia and MDS International Foundation, Inc. (bone marrow diseases)

Cooley's Anemia Foundation, Inc. (thalassemia)

Daniella Maria Arturi Foundation (Diamond-Blackfan anemia)

Familial TTP Foundation (thrombotic thrombocytopenic purpura)

Fanconi Anemia Research Fund, Inc.

Hemophilia Federation of America

HHT Foundation International, Inc. (hereditary hemorrhagic telangiectasia, Osler Weber Rendu syndrome)

Histiocytosis Association of America

Iron Disorders Institute

National Alliance for Thrombosis and Thrombophilia (NATT)

National Anemia Action Council

National Hemophilia Foundation

Neutropenia Support Association, Inc.

Platelet Disorder Support Association

Sickle Cell Disease Association of America, Inc.


Organizations Focusing on Sleep Disorders

American Sleep Apnea Association

First Candle/SIDS Alliance

Narcolepsy Network, Inc.

National Sleep Foundation

Restless Legs Syndrome Foundation

Wake Up Narcolepsy

Other Public Interest Organizations

American Autoimmune Related Diseases Association

APS Foundation of America, Inc.(antiphospholipid antibody syndrome)

Barth Syndrome Foundation, Inc.

Caring Voice Coalition, Inc.

CFIDS Association of America, Inc. (chronic fatigue and immune dysfunction syndrome)

Hermansky-Pudlak Syndrome Network, Inc.

Klippel-Trenaunay Support Group

Lymphangiomatosis & Gorham's Disease Alliance

Lymphatic Education & Research Network (LE&RN)

Malignant Hyperthermia Association of the United States (MHAUS)

National Foundation for Transplants

National Lymphedema Network, Inc.

National Marfan Foundation

Noonan Syndrome Support Group, Inc.

Parent Project Muscular Dystrophy

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)

Progeria Research Foundation, Inc.

PXE International, Inc. (pseudoxanthoma elasticum)

Scleroderma Foundation

TOPS Club, Inc. (Take Off Pounds Sensibly)

Tuberous Sclerosis Alliance

United Mitochondrial Disease Foundation

Vasculitis Foundation



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Last Updated July 2012