1p36 Deletion Support & Awareness

About.com Rare Diseases

Access Education

Accord Alliance

ACD Association

Aceras BioMedical, LLC

Acid Maltase Deficiency Association

ACOR (Association of Cancer Online Resources)

Actelion Pharmaceuticals, Inc.

Additional Kare for Kids, Inc.

Adenoid Cystic Carcinoma Research Foundation

Advancement of Research for Myopathies (ARM)

Advocacy for Patients with Chronic Illness, Inc.

AISSG-USA

Alagille Syndrome Alliance

Alexion Pharmaceuticals

Allsup

Alpha-1 Association

Alpha-1 Foundation

Alstrom Syndrome International

Alternating Hemiplegia of Childhood Foundation

American Academy of Dermatology Association

American Autoimmune Related Diseases Association

American Behcet’s Disease Association

American College of Medical Genetics

American Partnership for Eosinophilic Disorder

American Porphyria Foundation

American Self-Help Group Clearinghouse

American Syringomyelia and Chiari Alliance Project

Amicus Therapeutics

Amyloidosis Foundation

Amyloidosis Support Groups

Androgen Insensitivity Syndrome Support Group USA

Angelman Syndrome Foundation

Annett W. Snell Amyloidosis Foundation, Inc.

APBD Research Foundation

ApexMD.com

Aplastic Anemia & MDS International Foundation

APS Foundation of America, Inc.

Arach Friends

Association for Glycogen Storage Disease

Atlanta Judicial Circuit Probation

Aton Pharma, Inc.

Australian Lung Foundation

Australian Paediatric Surveillance Unit

Autoimmune Information Network

Barth Syndrome Foundation

Basal Cell Carcinoma Nevus Syndrome Life Support Network

Batten Disease Support and Research Association

Baxter Healthcare Corporation

BEBRF, Inc. (http://www.blepharospasm.org/)

Beyond Batten Disease Foundation

BIO (Biotechnology Industry Organization)

BioMarin Pharmaceutical Inc.

Blane Foundation

BRAIN TRUST: The Healing Exchange

Breath of Hope

British Paediatric Orphan Lung Diseases (BPOLD)

C.A.R.E.S. Foundation

Care-Aware

Caregivers of New Jersey

Caring for Carcinoid Foundation

The Cavan Tommy Hoey Trust (IRELAND)

CDG Family Network

Celgene Corporation

Center for Business Intelligence (CBI)

Center for Rare and Neglected Diseases, University of Notre Dame

Central Nervous System Vasculitis Foundation

Centric Health Resources

CFC International

Charcot-Marie-Tooth Association

Children’s Rare Disease Network

China-dolls Care and Support Association

Chinese Rare Disease Organization

The Cholangiocarcinoma Foundation

Chordoma Foundation

Chordoma Support Group

Chromosome Disorder Outreach, Inc.

Churg Strauss Syndrome Association

Cicatricial Alopecia Research Foundation

CJD Aware!

Clark and Daughtrey Medical Group

CLIMB National Information Centre for Metabolic Diseases

Cohn & Wolfe

Congenital Heart Information Network

Connective Tissue Oncology Society

Cornelia de Lange Syndrome Foundation

Costello Syndrome Family Network

CSL Behring

CureDuchenne

Cure JM Foundation (Juvenile Myositis)

Cushing’s Support and Research Foundation

Cutaneous Lymphoma Foundation

Cystinosis Foundation

Cystinosis Research Foundation

Cystinosis Research Network

Cytogenomics and Molecular Pathology, Washington University School of Medicine, St Louis.

Dandy-Walker Alliance

Daniella Maria Arturi Foundation, Research for the cure of Diamond Blackfan Anemia

DebRA of America, Inc.

Department of Orthopaedic Surgery, Thomas Jefferson University College of Medicine

Department of Pediatrics, University of Utah

Dercum’s Disease Support Group

Desmoid Tumor Research Foundation

Prof. Camillo O. Di Cicco, MD, Clinical Professor of Dermatology

Discover Dysautonomia

DNA Traits

DonateGames.org

Dravet Syndrome Foundation

Drewstock, Inc.

Dysautonomia Foundation, Inc.

Dystonia Medical Research Foundation

Dystrophic Epidermolysis Bullosa Research Association of Canada

ECD Global Alliance

Ehlers-Danlos National Foundation

Ehlers-Danlos Network C.A.R.E.S. Foundation

Ehlers-Danlos Syndrome Network CARES INC

Emory University Genetics Laboratory

Engage Health, Inc.

Enmedic clinic

Enobia

Errant Gene Therapeutics

Esophageal Cancer Action Network

Fabry Support and Information Group

FACES: The National Craniofacial Association

Fagan Center for Communication

Family Support Center of New Jersey

Fanconi Anemia Research Fund

Fat Disorders Research Society, Inc. (fatdisorders.org)

Fibrous Dysplasia Foundation

FMDSA (The Fibromuscular Dysplasia Society of America, Inc.)

FoldRx Pharmaceuticals, Inc.

Foundation for Better Health Care

Foundation for Ichthyosis and Related Skin Types, Inc.

Foundation of Molecular Medicine

Friedreich’s Ataxia Research Alliance (FARA)

Friends of Casey

Friends of Sammy-Joe Foundation

Fundación FOP

GARD (Genetic and Rare Diseases Information Center, NIH)

Genetix Pharmaceuticals, Inc.

Genzyme Corporation

GIST Support International

Global Genes Project

Glycobiology Research and Training Center at the University of California, San Diego

Good Shepherd Medical Center

Hannah’s Hope for Giant Axonal Neuropathy, Inc.

Hayden’s Hope for FOP Research

Healing broken places (klinefelter-syndrome.com)

Helping Hands Club, Massasoit Community College

Hemophilia Federation of America

Hereditary Disease Circle

Hereditary Neuropathy Foundation

HHT Foundation International

Hide and Seek Foundation for Lysosomal Disease Research

Hidradenitis Suppurativa Foundation, Inc.

Histiocytosis Association of America

Hospice and Healthcare Communications, LLC

HS-USA

Hunter’s Hope Foundation

Huntington’s Disease Society of America

Hydrocephalus Association

Hyperion Therapeutics, Inc.

IDEA League

IDEAS – IsoDicentric 15 Exchange Advocacy and Support

Idis

IDM Pharma

Illinois Department of Public Health, Genetics Program

Immune Deficiency Foundation

In Need Of Diagnosis, Inc. (INOD)

Incontinentia Pigmenti International Foundation

Infant Botulism Treatment and Prevention Program, California Department of Public Health

INO Therapeutics, Inc.

International Advocate for Glycoprotein Storage Diseases

International Costello Syndrome Support Group

International Cystinuria Foundation

International FOP Association

International Rett Syndrome Foundation

International WAGR Syndrome Association

Internationial Castleman’s Disease Organization

Intracranial Hypertension Research Foundation

Iowa Ataxia Support Group

Jacob’s Cure

Janine Sarcoidosis Outreach Foundation

Jordanian Association for Healthy Education

Keck Graduate Institute

Kakkis EveryLife Foundation

Kennedy’s Disease Association

KiP Magazine

Kleine-Levin Syndrome Foundation

Klippel-Trenaunay Support Group

LAM Foundation

LAM Treatment Alliance

Living with Stiff Person Syndrome

Living with Trisomy 13 – Patau Syndrome

Lubkin Fund for MHE Research

Lundbeck Inc.

Lymphangiomatosis and Gorham’s Disease Alliance

Lymphangiomatosis Foundation

Lymphatic Research Foundation

MAGIC Foundation

Malignant Hyperthermia Association of the United States

Manton Center for Orphan Disease Research, Children’s Hospital Boston

Marcus Gunn Foundation

Mark Krueger & Associates, Inc.

Mary Payton’s Miracle Foundation

Massasoit Community College

Mastocytosis Society

Mastokids.org

MdDS Balance Disorders Foundation

MDJunction.com Dercum’s Disease Support Group

MDS Foundation

Melorheostosis Association

MHE Coalition

MHE Research Foundation

Mississippi Mended Little Hearts

Moebius Syndrome Foundation

mondoBIOTECH

MOPIX-TC (Movie access for people with wision & hearing needs)

MPS Jajax A.C.

Mississippi Deaf-Blind Project

Mustang Insurance Agency

Myocarditis Foundation

Myositis Association

Narcolepsy Network, Inc.

National Adrenal Diseases Foundation

National Alliance for Thrombosis and Thrombophilia

National Ataxia Foundation

National Coalition for Health Professional Education in Genetics (NCHPEG)

National Eosinophilia Myalgia Syndrome Network

National Lymphedema Network

National Marfan Foundation

National Meningitis Association

National MPS Society

National Neutropenia Network

National Niemann-Pick Disease Foundation

National Organization for Albinism and Hypopigmentation

National Patient Travel Center

National Tay-Sachs & Allied Diseases Association (NTSAD)

National Urea Cycle Disorders Foundation

NBIA Disorders Association

Neurofibromatosis, Inc., Northeast

North American Malignant Hyperthermia Registry

Novartis Oncology

NPS Pharmaceuticals

Nutra Pharma Corp.

Optherion Inc.

Oregon Health & Science University Rare Disorders Research Consortium

Organic Acidemia Association

Orphan’s Dream Foundation

Our Promise to Nicholas Foundation

Oxalosis and Hyperoxaluria Foundation

Paget Foundation for Paget’s Disease of Bone and Related Disorders

Paley Advanced Limb Lengthening Institute

Palo Alto Investors

PC Project

PCD Foundation

Pediatric Adolescent Gastroesophageal Reflux Association

Pediatric Orthopaedic Society of North America (POSNA)

People Inc.

Periodic Paralysis Association

PFIC.org

Pfizer

Piedmont Editing Service

PKS Kids

Platelet Disorder Support Association

PMD Foundation

PMP Pals’ Network

PMP Research Foundation

Prader-Willi Syndrome Association

PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome)

Progeria Research Foundation

Program for Neurodevelopmental Function in Rare Disorders (NFRD), University of North Carolina

Progression BioSciences

PRS-Different Faces

Pull-thru Network

Pulmonary Hypertension Association

Questcor

Raptor Pharmaceuticals

RARE Project

RareShare

Ray Vanco Childrens Foundation

Raynaud’s Association, Inc.

Reaching Beyond the Clouds

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Regeneron Pharmaceuticals, inc.

RemedyMD Registries for Life Sciences

Resources of Hope

Reynolda Counseling Services

RLUC Inc

RSDLaughter.com

Rubinstein-Taybi Family Research Organization

Rubinstein-Taybi Syndrome Support Group

Rudd’s Air Service

Russell-Silversupport.org HJE Enterprise, LLC

Sanford-Burnham Medical Research Institute

Sarcoidosis Networking Association

Sarcoma Foundation of America

SCID, Angels for Life Foundation

Selexis SA

Shire Pharmaceuticals

Shwachman Diamond Syndrome Foundation

Sickle Cell Cure Foundation

Sigma-Tau Pharmaceuticals, Inc.

Society for Glycobiology

Soligenix, Inc.

Sotos Syndrome Support Association

Southern Clay Products

Spastic Paraplegia Foundation

Spinal Cord Tumor Association

Stanford University Medical Center ALS Clinic

STARS US

Stevens Johnson Syndrome Foundation

Stiff Person Syndrome Association

Stiffman Syndrome Blog (Debbie Richardson)

Sturge-Weber Foundation

Sydney (Australia) Children’s Hospital: Dr. Michael Brydon

Synageva Biopharma

Syndromes Without A Name USA

Syringomyelia Foundation

Talecris Biotherapeutics

Tarlov Cyst Disease Foundation

The Alliance Against Alveolar Soft Part Sarcoma

The Anson Group LLC

The M.O.R.G.A.N. Project

The Mastocytosis Society

The NOMID Alliance

The Wales Fund

Therakos, Inc.

ThyCa: Thyroid Cancer Survivors’ Association, Inc.

TNA, The Facial Pain Association

Trimethylaminuria Foundation

Trisomy 18 Foundation

UNC Chapel Hill School of Nursing

United Mitochondrial Disease Foundation

United Pompe Foundation

University of Connecticut Premedical Society

Unlock the Cure for Ewing’s Sarcoma

Uplifting Athletes

US Hereditary Angioedema Association

UT GSM Preston Medical Library

Vasculitis Foundation

VHL Family Alliance

ViroPharma Inc.

Walk a Mile in My Shoes Campaign, EB Awareness

WE MOVE

Werathah Web Site for Genetics Education: Saudi Arabia

Wilson Disease Association

WI Bleeding Disorders Network

Wobbly Feet Foundation, Inc.

Woodland Healthcare

Woody’s Mom, Inc.

XLH Network

Zacharon Pharmaceuticals, Inc.