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: https://leukemiarf.org/
Phone: 847-424-0600
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
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)