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- Disease-Specific Organizations

This section includes professional and membership organizations focused on specific diseases and disorders. The organizations offer specialized information and, in some cases, services for you and your family member. You will find programs specific to your state AND national organizations directing you to local resources (availability of services and eligibility criteria may vary by state/locality).

Select another State:

ProgramDescriptionEligibilityPhoneWebsite
  CaregiverCare Recipient 
State-Level
National-Level
ALS Association

Provides help to ALS patients and their families through research, patient and community services, public education, and advocacy. Includes a nationwide network of 30 certified ALS clinics which provide state-of-the-art, multidisciplinary ALS care and services.

AnyoneAnyone(800) 782-4747http:/​/​www.alsa.org
Alzheimer's Association

Provides reliable information, care consultation and supportive services for dementia caregivers through state and local chapters. The website also includes an interactive tool, CareFinder, which helps families to:
• Recognize dementia care
• Plan and pay for care
• Communicate with care providers
• Find local support and resources

AnyoneAnyone(800) 272-3900 
Hotline available
24 hours 7 days a week

http:/​/​www.alz.org

Alzheimer's Disease Cooperative Study (ADCS)

Conducts clinical trials on promising medications designed to improve cognitive functioning, decrease behavioral disturbances, slow the rate of decline, or delay the onset of Alzheimer’s disease.

AnyoneAnyone(858) 622-5880http:/​/​adcs.ucsd.edu
Alzheimer's Disease Education & Referral (ADEAR) Center - Alzheimer's Disease Clinical Trials Database

Online resource provides current, comprehensive information on Alzheimer's disease and caring for someone with the disease. Includes a database of clinical trials.

AnyoneAnyone(800) 438-4380http:/​/​www.nia.nih.gov/​Alzheimers
Alzheimer Research Forum

Online resource reports on the latest scientific findings, creates and maintains public databases of research data, and produces discussion forums.

AnyoneAnyone___http:/​/​www.alzforum.org
American Brain Tumor Association

Offers programs and services to meet the needs of brain tumor patients and their families such as a monthly e-bulletin with tips on living and coping, support groups and in-person consultation services from social work professionals.

AnyoneAnyone(800) 886-2282http:/​/​www.abta.org
American Cancer Society

Provides a national call center, publications and community programs and services for cancer patients and their caregivers.

AnyoneAnyone(800) 227-2345http:/​/​www.cancer.org
American Chronic Pain Association

Offers patients and their families resources to better manage chronic pain their lives including support groups, videos, and coping tips.

AnyoneAnyone(800) 533-3231http:/​/​www.theacpa.org
American Diabetes Association

Provides information and other services to people with diabetes, their families, health professionals and the public.

AnyoneAnyone(800) 342-2383 

See website for local chapter contact information
http:/​/​www.diabetes.org
American Heart Association

Provides credible heart disease information for effective prevention and treatment of cardiovascular diseases and stroke.

AnyoneAnyone(800) 242-8721 

See website for local chapter contact information
http:/​/​www.americanheart.org
American Kidney Fund

Provides advocacy, information about prevention, and health education concerning Kidney disease.  Also, offers limited financial assistance for the following programs:
• Health Insurance Premium Program
Medicare Part D
• Safety Net

AnyoneAnyone(800) 638-8299http:/​/​www.kidneyfund.org/​
American Pain Foundation

Serves as an information clearinghouse and resource center for people with pain, their families and their caregivers, the general public, health care professionals, policymakers, and the media.

AnyoneAnyone(888) 615-PAIN  
(888) 615-7246
http:/​/​www.painfoundation.org
American Parkinson Disease Association, Inc. (APDA)

Supports research, provides patient and caregiver support and coordinates 65 chapters and 57 information & referral centers.

AnyoneAnyone(800) 223-2732http:/​/​www.apdaparkinson.org
American Stroke Association

A division of the American Heart Association, provides information and referrals to stroke survivors and their caregivers through the Stroke Family Warmline.

AnyoneAnyone(888) 478-7653http:/​/​www.strokeassociation.org
Arthritis Foundation

Provides a large number of community-based services nationwide to make life with arthritis easier, including: support groups, informational and exercise classes and free educational brochures and booklets.

AnyoneAnyone(800) 283-7800 

See website for local chapter contact information
http:/​/​www.arthritis.org
Association for Frontotemporal Dementias (AFTD)

Promotes and funds research, and provides information, education and support to people with FTD and their caregivers.

AnyoneAnyone(866) 507-7222http:/​/​www.ftd-picks.org
Brain Injury Association of America

Serves as a clearinghouse for information and resources on brain injury. Operates a Family Helpline for families of brain injury patients seeking assistance, education and support.

AnyoneAnyone(800) 444-6443http:/​/​www.biausa.org
Brain Injury Resource Center

Serves as a clearinghouse of scientific and medical information about brain injuries. Also provides information and consultations for additional resources.

AnyoneAnyone(206) 621-8558http:/​/​www.headinjury.com
BrainLine

National multimedia project offering information and resources about preventing, treating, and living with traumatic brain injury (TBI).  Its website includes a series of webcasts, an electronic newsletter, and a section on resources for people affected by TBI and their families.

AnyoneAnyone___http:/​/​www.brainline.org/​
Brain Tumor Society

Provides information about brain tumors and caregiver support services to patients and families.  Offers one-to-one support over the phone or email regarding decisions for treatment. Also offers a list of support groups located throughout the United States and Canada.

AnyoneAnyone(800) 770-TBTS
(800-770-8287)

Patient Services:
(800) 934-2873
http:/​/​www.tbts.org
CancerCare

Provides support services for anyone affected by cancer including limited financial assistance grants for:
• Transportation
• Child care  
• Home care

AnyonePatient must currently be receiving treatment for cancer (800) 813-4673http:/​/​www.cancercare.org
Cancer Information

A program of the National Cancer Institute, CIS provides personalized, confidential responses to specific questions about cancer. Information specialists are available by telephone and online.

AnyoneAnyone(800) 4-CANCER
(800-422-6237)
Available Weekdays
9:00am to 4:30pm
(Eastern Time)
*Assistance is also available in Spanish
http:/​/​www.cancer.gov/​aboutnci/​cis
Defeat Diabetes Foundation

Provides information to promote awareness, prevention and early detection of diabetes. Offers free online monthly newsletter and screening tool. A listing of diabetes education programs and support groups in all 50 states is available.

AnyoneAnyoneSee website for local contact informationhttp:/​/​www.defeatdiabetes.org
Healing Exchange BRAIN TRUST

Offers more than a dozen online support groups and resources about brain tumors and related conditions.

Anyone caring for someone who meets care recipient eligibility.Anyone with a brain tumor.(877) 252-8480http:/​/​www.braintrust.org
Hungtinton's Disease Advocacy Center

Provides information on Huntington's disease and resources for caregivers, including a list of online support groups.

AnyoneAnyone___http:/​/​www.hdac.org
Huntington's Disease Society of America

Provides support, information and educational services to Huntington's disease families through a network of volunteer-based chapters and affiliates.

AnyoneAnyone(800) 345-4372http:/​/​www.hdsa.org
Huntington's Disease Support Information

An online service that offers state-specific information and resources on Huntington's disease for individuals and caregivers.

AnyoneAnyoneSee website for local contact information
*Note: individual state pages are no longer being updated.
http:/​/​huntingtondisease.tripod.com/​statebystatesupport/​
Hydrocephalus Association

Offers services and resources to patients, their families and professionals including personal support and educational materials about hydrocephalus.

AnyoneAnyone(888) 598-3789 
Available every day from
9:00am-4:00pm
(Pacific Time)
http:/​/​www.hydroassoc.org
Leukemia and Lymphoma Society

Operates a call center that provides information on local resources as well as support and guidance.  Provides financial assistance to qualified blood cancer patients, information about leukemia and lymphoma, and other information for patients and their families.  

AnyoneAnyone(800) 955-4572 
Available weekdays
9:00am - 6:00pm
(Eastern Time)
http:/​/​www.leukemia-lymphoma.org
Lewy Body Dementia Association, Inc. (LBDA)

Provides scientific, clinical, and caregiver information on Lewy Body Dementia and offers phone and email helplines for caregivers.

AnyoneAnyone(800) 539-9767http:/​/​www.lewybodydementia.org
Multiple Sclerosis Foundation

Offers a national toll-free helpline, online forum, and a support group directory.

AnyoneAnyone(888) MSFOCUS  
(888) 673-6287 
9:00am - 7:00pm
(Eastern Time)
http:/​/​www.msfacts.org
National Brain Tumor Foundation

Provides information and support for brain tumor patients, family members, and healthcare professionals regarding treatment options and community resources. It also offers a range of opportunities to connect with other patients or caregivers through the Internet, by phone or in-person.

AnyoneAnyone(800) 934-2873http:/​/​www.braintumor.org
National Diabetes Information Clearinghouse

An information service of the National Institute of Diabetes and Digestive and Kidney Diseases, the clearinghouse responds to inquiries about diabetes, provides referrals to health professionals, and offers publications about diabetes.                                          

AnyoneAnyone(800) 860–8747http:/​/​diabetes.niddk.nih.gov
National Kidney Foundation

Supports families affected by Kidney disease and advocates for the increase of all organs for transplantation.  Also, provides current news, resources, and comprehensive information about kidney disease, connection to journals and newsletters, and zip code search to find local kidney organization.

AnyoneAnyone(800) 622-9010http:/​/​www.kidney.org/​
National Multiple Sclerosis Society

Promotes research, provides education about the disease, and organizes a wide range of programs for people newly diagnosed with MS or those living with the disease over time.

AnyoneAnyone(800) 344-4867 

See website for local chapter information
http:/​/​main.nationalmssociety.org
National Organization for Rare Disorders (NORD)

Provides information about rare diseases, referrals to patient organizations, advocacy for the rare-disease community, and Medication Assistance Programs that help patients obtain certain drugs they could not otherwise afford.

AnyoneAnyone(800) 999-6673http:/​/​www.rarediseases.org
National Pain Foundation

Serves as an on-line educational and support community for persons in pain and their families. Also offers an online database of pain care providers that is searchable by name, specialty, location, pain condition, and/or treatment options.

AnyoneAnyoneSee website for local contact informationhttp:/​/​www.nationalpainfoundation.org
National Stroke Association

Provides information and resources to stroke survivors and their families including stroke support groups and a recovery guide.

AnyoneAnyone(800) STROKES  
(800) 787-6537
http:/​/​www.stroke.org
Parkinson's Disease Foundation

Provides a toll-free line  and an online resource center to answer questions regarding Parkinson's disease.

AnyoneAnyone(800) 457-6676http:/​/​www.pdf.org
The HD Lighthouse

Provides up-to-date information about research on the treatment, care, diagnosis of Huntington's Disease. Also offers online support group and chatroom.

AnyoneAnyone___http:/​/​www.hdlighthouse.org
The Wellness Community

A nonprofit organization dedicated to helping people with cancer and their loved ones. Offer free services and programs including support groups, stress reduction programs and educational workshops through local chapters in communities across the country.

AnyoneAnyone(888) 793-WELL  
(888) 793-9355 
(202) 659-9709
http:/​/​www.thewellnesscommunity.org
Young Onset Parkinson's Association

Online resource includes information on the disease, support groups, a chat room, and other online group forums for young adults with Parkinson's disease and their families.

AnyoneAnyone___http:/​/​www.youngparkinsons.com
 
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