Find a Rare Disease Patient Organization

Our Organizational Database (ODB) offers patients and families a listing of organizations and resources that can provide them with free information, support, and services. These organizations can be very important in helping navigate living with a rare disease.
ODB Disclaimer: Please note that NORD provides this information for the benefit of the rare disease community. By providing this information, NORD is not endorsing or recommending any organization’s programs or services.

American Lung Association

Email: [email protected]

Related Rare Diseases: Pediatric Non-Small Cell Lung Cancer, Small Cell Lung Cancer, Antisynthetase Syndrome, ...

https://rarediseases.org/organizations/american-lung-association/

American Lung Association in Connecticut, East Hartford

Email: [email protected]

https://rarediseases.org/organizations/american-lung-association-in-connecticut-east-hartford/

American Medical Association

Phone: 312-464-5000 Email: [email protected]

https://rarediseases.org/organizations/american-medical-association/

American Medical Association DoctorFinder

https://rarediseases.org/organizations/american-medical-association-doctorfinder/

American Medical Women’s Association

Phone: 703-234-4069 Email: [email protected]

https://rarediseases.org/organizations/american-medical-womens-association/

American Migraine Foundation

Email: [email protected]

https://rarediseases.org/organizations/american-migraine-foundation/

American Multiple Endocrine Neoplasia Support

Email: [email protected]

Related Rare Diseases: Zollinger-Ellison Syndrome, Multiple Endocrine Neoplasia Type 2, Multiple Endocrine Neoplasia Type 1 ...

https://rarediseases.org/organizations/american-multiple-endocrine-neoplasia-support/

American Neurological Association

Email: [email protected]

https://rarediseases.org/organizations/american-neurological-association/

American Nystagmus Network, Inc.

Email: [email protected]

Related Rare Diseases: Benign Paroxysmal Positional Vertigo

https://rarediseases.org/organizations/american-nystagmus-network-inc/

American Occupational Therapy Association, Inc.

Email: [email protected]

https://rarediseases.org/organizations/american-occupational-therapy-association-inc/

American Organ Transplant Association

Email: [email protected]

Related Rare Diseases: Barth Syndrome, Eisenmenger Syndrome

https://rarediseases.org/organizations/american-organ-transplant-association/

American Orthopaedic Society for Sports Medicine

Email: [email protected]

https://rarediseases.org/organizations/american-orthopaedic-society-for-sports-medicine/

American Otological Society

Phone: 410-955-7381 Email: [email protected] Fax: 410-955-0035

https://rarediseases.org/organizations/american-otological-society/

American Partnership for Eosinophilic Disorders (APFED)

NORD Member

Email: [email protected]

Related Rare Diseases: Acute Eosinophilic Pneumonia, Chronic Eosinophilic Pneumonia, Eosinophilic Esophagitis, ...

https://rarediseases.org/organizations/american-partnership-for-eosinophilic-disorders-apfed/

American Pediatric Association

Email: [email protected]

https://rarediseases.org/organizations/american-pediatric-association/

American Porphyria Foundation (APF)

NORD Member

Email: [email protected]

Related Rare Diseases: Hepatoerythropoietic Porphyria, X-Linked Protoporphyria, Porphyrias, ...

https://rarediseases.org/organizations/american-porphyria-foundation-apf/

American Printing House for the Blind

Phone: 502-895-2405 Email: [email protected] Fax: 502-899-2274

Related Rare Diseases: Retinitis Pigmentosa

https://rarediseases.org/organizations/american-printing-house-for-the-blind/

American Psychiatric Association

Phone: 202-682-6000 Email: [email protected] Fax: 202-682-6850

https://rarediseases.org/organizations/american-psychiatric-association/

American Psychoanalytic Association

Phone: 212-752-0450 Email: [email protected] Fax: 212-593-0571

https://rarediseases.org/organizations/american-psychoanalytic-association/

American Rhinologic Society

Phone: 845-988-1631 Email: [email protected] Fax: 845-986-1527

https://rarediseases.org/organizations/american-rhinologic-society/

American RSDHope

Phone: 207-583-4589 Email: [email protected] Fax: 207-583-4978

https://rarediseases.org/organizations/american-rsdhope/

American Sexual Health Association

Phone: 919-361-8400 Email: [email protected] Fax: 919-361-8425

https://rarediseases.org/organizations/american-sexual-health-association/

American Sickle Cell Anemia Association

Phone: 216-229-8600 Email: [email protected] Fax: 216-229-4500

Related Rare Diseases: Sickle Cell Disease, Enfermedad de células falciformes

https://rarediseases.org/organizations/american-sickle-cell-anemia-association/

American SIDS Institute

Phone: 239-431-5425 Email: [email protected] Fax: 239-431-5536

Related Rare Diseases: Sudden Infant Death Syndrome

https://rarediseases.org/organizations/american-sids-institute/

American Skin Association

Email: [email protected]

Related Rare Diseases: Bowen Disease

https://rarediseases.org/organizations/american-skin-association/

American Sleep Apnea Association

Email: [email protected]

https://rarediseases.org/organizations/american-sleep-apnea-association/

American Society for Colposcopy and Cervical Pathology

Phone: 301-733-3640 Fax: 240-575-9880

https://rarediseases.org/organizations/american-society-for-colposcopy-and-cervical-pathology/

American Society for Deaf Children

Phone: 866-895-4206 Email: [email protected] Fax: 410-795-0965

Related Rare Diseases: Perrault Syndrome, Pendred Syndrome, Auditory Neuropathy Spectrum Disorder, ...

https://rarediseases.org/organizations/american-society-for-deaf-children/

American Society For Dermatologic Surgery

Email: [email protected]

https://rarediseases.org/organizations/american-society-for-dermatologic-surgery/

American Society for Experimental NeuroTherapeutics

Phone: 860-586-7570 Email: [email protected] Fax: 860-586-7550

https://rarediseases.org/organizations/american-society-for-experimental-neurotherapeutics/

American Society for Gastrointestinal Endoscopy

Email: [email protected]

https://rarediseases.org/organizations/american-society-for-gastrointestinal-endoscopy/

American Society for Histocompatibility & Immunogenetics

Email: [email protected]

https://rarediseases.org/organizations/american-society-for-histocompatibility-immunogenetics/

American Society for Reproductive Medicine

Phone: 205-978-5000 Email: [email protected] Fax: 205-978-5005

https://rarediseases.org/organizations/american-society-for-reproductive-medicine/

American Society of Andrology

Phone: 847-619-4909 Email: [email protected] Fax: 847-517-7229

https://rarediseases.org/organizations/american-society-of-andrology/

American Society of Anesthesiologists

Phone: 847-825-5586 Email: [email protected] Fax: 847-825-1692

https://rarediseases.org/organizations/american-society-of-anesthesiologists/

American Society of Colon and Rectal Surgeons

Phone: 847-290-9184 Email: [email protected] Fax: 847-290-9203

https://rarediseases.org/organizations/american-society-of-colon-and-rectal-surgeons/

American Society of Dermatopathology

https://rarediseases.org/organizations/american-society-of-dermatopathology/

American Society of Human Genetics

Phone: 301-634-7300 Email: [email protected] Fax: 301-634-7079

https://rarediseases.org/organizations/american-society-of-human-genetics/

American Society of Nephrology

Phone: 202-659-0599 Email: [email protected] Fax: 202-637-9793

https://rarediseases.org/organizations/american-society-of-nephrology/

American Society of Parenteral and Enteral Nutrition

Phone: 301-587-6315 Email: [email protected] Fax: 301-587-2365

Related Rare Diseases: Short Bowel Syndrome, Duodenal Atresia or Stenosis

https://rarediseases.org/organizations/american-society-of-parenteral-and-enteral-nutrition/

American Society of Plastic Surgeons

Phone: 847-228-9900 Email: [email protected]

https://rarediseases.org/organizations/american-society-of-plastic-surgeons/

American Society of Transplantation

Phone: 856-439-9986 Email: [email protected] Fax: 856-439-9982

https://rarediseases.org/organizations/american-society-of-transplantation/

American Society of Tropical Medicine and Hygiene

Email: [email protected]

https://rarediseases.org/organizations/american-society-of-tropical-medicine-and-hygiene/

American Speech-Language-Hearing Association

Phone: 301-296-5700 Email: [email protected] Fax: 301-296-8580

Related Rare Diseases: Fountain Syndrome, Gerstmann Syndrome, CHARGE Syndrome, ...

https://rarediseases.org/organizations/american-speech-language-hearing-association/

American Spinal Injury Association

Phone: 404-355-9772 Email: [email protected] Fax: 404-355-1826

Related Rare Diseases: Brown Séquard Syndrome, Syringobulbia

https://rarediseases.org/organizations/american-spinal-injury-association/

American Thoracic Society

Phone: 212-315-8600 Email: [email protected] Fax: 212-315-6498

https://rarediseases.org/organizations/american-thoracic-society/

American Tinnitus Association

Phone: 503-248-9985 Email: [email protected] Fax: 503-248-0024

Related Rare Diseases: Tinnitus, Acoustic Neuroma

https://rarediseases.org/organizations/american-tinnitus-association/

American Trauma Society

Phone: 703-538-3544 Email: [email protected] Fax: 703-241-5603

https://rarediseases.org/organizations/american-trauma-society/

American Urological Association, Inc.

Phone: 410-689-3700 Email: [email protected] Fax: 410-689-3800

https://rarediseases.org/organizations/american-urological-association-inc/

American Vitiligo Research Foundation, Inc.

Phone: 727-461-3899 Email: [email protected] Fax: 727-461-4796

https://rarediseases.org/organizations/american-vitiligo-research-foundation-inc/