Advocacy and Support Groups

Cancer

Adenoid Cystic Carcinoma


Adenoid Cystic Carcinoma Organization International 
Website: www.accoi.org 
Phone: 888-223-7983

Adenoid Cystic Carcinoma Research Foundation 
Website: www.accrf.org 
Phone: 781-248-9699 

National Organization for Rare Disorders (NORD) 
Website: www.rarediseases.org 
Phone: 202-588-5700 

Rare Cancer Alliance 
Website: www.rare-cancer.org 
Phone: not listed 

Support for People with Oral, Head, and Neck Cancer (SPOHNC) 
Website: www.spohnc.org

Adrenal Gland Tumor


National Organization for Rare Disorders (NORD) 
Website: www.rarediseases.org 

Rare Cancer Alliance 
Website: www.rare-cancer.org

Amyloidosis


Amyloidosis Foundation 
Website: www.amyloidosisresearchfoundation.org 

Amyloidosis Support Groups, Inc. 
Website: www.amyloidosissupport.com 

Amyloidosis Support Network 
Website: www.amyloidosis.org 

National Organization for Rare Disorders (NORD) 
Website: www.rarediseases.org 

Rare Cancer Alliance 
Website: www.rare-cancer.org

Bladder Cancer


Bladder Cancer Advocacy Network (BCAN) 
Website: www.bcan.org
Phone: 301-215-9099 or 888-901-2226 

Urology Care Foundation 
Website: www.urologyhealth.org 
Phone: 800-828-7866

United Ostomy Associations of America (UOAA) 
Website: www.ostomy.org

Brain Tumor


American Brain Tumor Association 
Website: www.abta.org 
Phone: 800-886-2282 

National Brain Tumor Society 
Website: www.braintumor.org 
Phone: 617-924-9997 

The Brain Tumor Foundation 
Website: www.braintumorfoundation.org

Breast Cancer


After Breast Cancer Diagnosis (ABCD) 
Website: www.abcdbreastcancersupport.org 
Phone: 800-977-4121 

Breast Cancer Research Foundation (BCRF) 
Website: www.bcrfcure.org 
Phone: 646-497-2600 or 866-346-3228 

Breastcancer.org 
Website: www.breastcancer.org 
Phone: 610-642-6550 

Facing Our Risk of Cancer Empowered (FORCE) 
Website: www.facingourrisk.org 
Phone: 866-288-7475    

Her2 Support Group 
Website: her2support.org 

Inflammatory Breast Cancer Research Foundation 
Website: www.ibcresearch.org 
Phone: 877-786-7422 

John W. Nick Foundation, Inc. (Male Breast Cancer) 
Website: https://www.johnwnickfoundation.org/ 

Living Beyond Breast Cancer (LBBC) 
Website: www.lbbc.org 
Phone: 484-708-1550 or 610-645-4567 
or 888-753-5222 (Survivor’s helpline) 

Metastatic Breast Cancer Network (MBCN) 
Website: mbcn.org 
Phone: 888-500-0370 

Mothers Supporting Daughters with Breast Cancer 
Website: www.mothersdaughters.org 

National Breast Cancer Coalition 
Website: www.stopbreastcancer.org 
Phone: 800-622-2838 or 202-296-7477

National Breast Cancer Foundation, Inc. 
Website: www.nationalbreastcancer.org 

National Consortium of Breast Centers (NCBC)
Website: www2.breastcare.org/asbd-and-ncbc/ 

National Lymphedema Network (NLN) 
Website: www.lymphnet.org 

Nueva Vida, Inc. 
Website: www.nueva-vida.org 

SHARE: Self-help for Women with Breast or Ovarian Cancer 
Website: www.sharecancersupport.org

Sisters Network, Inc. 
Website: www.sistersnetworkinc.org 
Phone: 713-781-0255 or 866-781-1808

Susan G. Komen Breast Cancer Foundation 
Website: www.komen.org 
Phone: 877-465-6636 

Young Survival Coalition (YSC) 
Website: www.youngsurvival.org 
Phone: 646-257-3000 or 877-972-1011

Carcinoid Cancer/Endocrine Tumors


Carcinoid Cancer Foundation, Inc. 
Website: www.carcinoid.org 
Phone: 888-722-3132

Rare Cancer Alliance 
Website: www.rare-cancer.org

Cervical Cancer


National Cervical Cancer Coalition (NCCC) 
Website: www.nccc-online.org

Colon Cancer


Colon Cancer Alliance (CCA) 
Website: www.ccalliance.org
Phone: 877-422-2030

Fight Colorectal Cancer 
Website: fightcolorectalcancer.org
Phone: 877-427-2111

The Susan Cohan Kasdas Colon Cancer Foundation 
Website: www.coloncancerfoundation.org

United Ostomy Associations of America (UOAA) 
Website: www.ostomy.org

Esophageal Cancer


Esophageal Cancer Awareness Association 
Website: www.ecaware.org

Eye Cancer


The Eye Cancer Network 
Website: www.eyecancer.com

Gastrointestinal Stromal Tumor (GIST)


GIST Support International 
Website: www.gistsupport.org

Sarcoma Alliance 
Website: www.sarcomaalliance.org

Sarcoma Foundation of America 
Website: www.curesarcoma.org

The Life Raft Group (LRG) 
Website: www.liferaftgroup.org

Head and Neck Cancer


Head and Neck Cancer Alliance (HNCA) 
Website: www.headandneck.org 
Phone: 866-792-4622

Oral Cancer Foundation 
Website: www.oralcancerfoundation.org 
Phone: 949-646-8000

Support for People with Oral and Head and Neck Cancer (SPOHNC) 
Website: spohnc.org
Phone: 800-377-0928

Islet Cell Tumors


Hirshberg Foundation for Pancreatic Cancer Research 
Website: www.pancreatic.org

Lustgarten Foundation for Pancreatic Cancer Research 
Website: www.lustgarten.org

Kidney Cancer


Action to Cure Kidney Cancer 
Website: www.ackc.org

Kidney Cancer Association (KCA) 
Website: www.kidneycancer.org
Phone: 800-850-9132

Urology Care Foundation 
Website: www.urologyhealth.org
Phone: 800-828-7866

Leukemia and Lymphoma


Leukemia and Lymphoma Society 
Website: www.lls.org 
Phone: 800-955-4572

Leukemia Research Foundation 
Website: www.leukemia-research.org
Phone: 847-424-0600 or 888-558-5385

Lymphoma Research Foundation 
Website: www.lymphoma.org
Phone: 800-500-9976

Liver Cancer


American Liver Foundation 
Website: www.liverfoundation.org
Phone: 800-465-4837

Lung Cancer


American Lung Association (ALA) 
Website: www.lung.org
Phone: 800-586-4872

Lung Cancer Alliance 
Website: www.lungcanceralliance.org
Phone: 800-298-2436 or 202-463-2080

Melanoma/Skin Cancer


Aim at Melanoma 
Website: www.aimatmelanoma.org
Phone: 877-246-2635

Melanoma Research Foundation (MRF) 
Website: www.melanoma.org
Phone: 877-673-6460 or 800-673-1290

Skin Cancer Foundation 
Website: www.skincancer.org
Phone: 800-754-6490 or 212-725-5176

Myelodysplastic Syndromes


The MDS Foundation 
Website: www.mds-foundation.org
Phone: 800-637-0839

Myeloma


International Myeloma Foundation (IMF) 
Website: myeloma.org
Phone: 800-452-2873

Multiple Myeloma Research Foundation (MMRF)fara 
Website: www.multiplemyeloma.org
Phone: 203-229-0464

Neuroendocrine Tumor


The Carcinoid Cancer Foundation, Inc. 
Website: www.carcinoid.org

Pancreatic Cancer


Cure Pancreatic Cancer: The Lustgarten Foundation 
Website: www.lustgarten.org
Phone: 866-789-1000

Pancreatica 
Website: www.pancreatica.org
Phone: 800-525-3777

Pancreatic Cancer Action Network (PanCAN) 
Website: www.pancan.org
Phone: 877-272-6226

The National Pancreas Foundation 
Website: pancreasfoundation.org

Prostate Cancer


Malecare 
Website: www.malecare.com
Phone: 212-673-4920

Prostate Cancer Foundation 
Website: www.pcf.org 
Phone: 800-757-2873

Prostate Cancer International 
Website: pcainternational.org
Phone: not listed

Urology Care Foundation 
Website: www.urologyhealth.org
Phone: 800-828-7866

US-TOO! International, Inc. 
Website: www.ustoo.org
Phone: 800-808-7866

ZERO: The Project to End Prostate Cancer 
Website: zerocancer.org 
Phone: 202-463-9455 or 888-245-9455

Thyroid Cancer


Thyroid Cancer Survivors Association, Inc. 
Website: www.thyca.org 
Phone: 877-588-7904

Cystic Fibrosis

Boomer Esiason Foundation

Website: www.esiason.org

Phone: 646-292-7930

Cystic Fibrosis Foundation

Website: www.cff.org

Phone: 800-344-4823

Cystic Fibrosis Research Inc.

Website: www.cfri.org

Phone: 855-237-4669 (toll free)

Endocrinology and Growth Hormones

ADRENAL DISORDERS

National Adrenal Diseases Foundation

Website: www.nadf.us/adrenal-diseases

Phone: 516-487-4992

GROWTH HORMONE DEFICIENCIES

Human Growth Foundation

Website: www.hgfound.org

Phone: 800-451-6434

The Magic Foundation

Website: www.magicfoundation.org

Phone: 800-362-4423

Thyroid Disorders

American Thyroid Association

Website: www.thyroid.org

Phone: 703-998-8890

Grave’s Disease and Thyroid Foundation

Website: www.gdatf.org

Phone: 877-643-3123 (toll free)

Inflammatory Bowel Disease

Crohn's disease

Crohn’s & Colitis Foundation of America

Website: www.ccfa.org

Phone: 800-932-2423

Ulcerative colitis

Crohn’s & Colitis Foundation of America

Website: www.ccfa.org

Phone: 800-932-2423

Hepatitis-C

Hepatitis C Association

Website: www.hepcassoc.org

Phone: 908-769-8479

American Liver Foundation

Website: www.liverfoundation.org

Phone: 800-465-4837

HIV

AIDS United

Website: www.aidsunited.org

Phone: 202-408-4848

Avert

Website: www.avert.org

Multiple Sclerosis

National Multiple Sclerosis Society

Website: www.nationalmssociety.org

Multiple Sclerosis Foundation

Website: www.msfocus.org

Phone: 800-225-6495

Multiple Sclerosis Association of America

Website: www.mymsaa.org

Osteoporosis

National Osteoporosis Foundation

Website: http://nof.org

Phone: 800-231-4222

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Website: www.niams.nih.gov

Phone: 877-226-4267 (toll free)

Psoriasis

American Academy of Dermatology

Website: https://www.aad.org

Phone: 866-503-SKIN (7546) (toll free)

National Psoriasis Foundation

Website: www.psoriasis.org

Phone: 800-723-9166

Rheumatology

Ankylosing Spondylitis

Arthritis Foundation

Website: www.arthritis.org

Phone: 404-872-7100

American College of Rheumatology

Website: www.rheumatology.org

Phone: 404-633-3777

Spondylitis Association of America

Website: www.spondylitis.org

Phone: 800-777-8189

Osteoarthritis

Arthritis Foundation

Website: www.arthritis.org

Phone: 404-872-7100

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Website: www.niams.nih.gov

Phone: 877-226-4267 (toll free)

Rheumatoid Arthritis

Arthritis Foundation

Website: www.arthritis.org

Phone: 404-872-7100

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Website: www.niams.nih.gov

Phone: 877-226-4267 (toll free)

American College of Rheumatology

Website: www.rheumatology.org

Phone: 404-633-3777

Solid Organ Transplant

American Heart Association

Website: www.heart.org

Phone: 800-242-8721

American Liver Foundation

Website: www.liverfoundation.org

Phone: 800-465-4837

National Kidney Foundation

Website: www.kidney.org

Phone: 800-622-9010

American Lung Association

Website: www.lung.org

Phone: 800-LUNGUSA (586-4872)