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).
| || ||Caregiver||Care Recipient|| |
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.
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
|Anyone||Anyone||(800) 272-3900 |
24 hours 7 days a week
|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 Alzheimers disease.
|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.
|Alzheimer Research Forum|
Online resource reports on the latest scientific findings, creates and maintains public databases of research data, and produces discussion forums.
|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.
|American Cancer Society|
Provides a national call center, publications and community programs and services for cancer patients and their caregivers.
|American Chronic Pain Association|
Offers patients and their families resources to better manage chronic pain their lives including support groups, videos, and coping tips.
|American Diabetes Association|
Provides information and other services to people with diabetes, their families, health professionals and the public.
|Anyone||Anyone||(800) 342-2383 |
See website for local chapter contact information
|American Heart Association|
Provides credible heart disease information for effective prevention and treatment of cardiovascular diseases and stroke.
|Anyone||Anyone||(800) 242-8721 |
See website for local chapter contact information
|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
|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.
|Anyone||Anyone||(888) 615-PAIN |
|American Parkinsons Disease Association- National Young Onset Center|
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.
|American Parkinson Disease Association, Inc. (APDA)|
Supports research, provides patient and caregiver support and coordinates 65 chapters and 57 information & referral centers.
|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.
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.
|Anyone||Anyone||(800) 283-7800 |
See website for local chapter contact information
|Association for Frontotemporal Dementias (AFTD)|
Promotes and funds research, and provides information, education and support to people with FTD and their caregivers.
|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.
|Brain Injury Resource Center|
Serves as a clearinghouse of scientific and medical information about brain injuries. Also provides information and consultations for additional resources.
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.
Provides support services for anyone affected by cancer including limited financial assistance grants for:
|Anyone||Patient must currently be receiving treatment for cancer ||(800) 813-4673||http://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.
9:00am to 4:30pm
*Assistance is also available in Spanish
|Cancer Support 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.
|Anyone||Anyone||(888) 793-WELL |
|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.
|Anyone||Anyone||See website for local contact information||http://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) 252-8480||http://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.
|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.
|Huntington's Disease Support Information|
An online service that offers state-specific information and resources on Huntington's disease for individuals and caregivers.
|Anyone||Anyone||See website for local contact information|
*Note: individual state pages are no longer being updated.
Offers services and resources to patients, their families and professionals including personal support and educational materials about hydrocephalus.
|Anyone||Anyone||(888) 598-3789 |
Available every day from
|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.
|Anyone||Anyone||(800) 955-4572 |
9:00am - 6:00pm
|Lewy Body Dementia Association, Inc. (LBDA)|
Provides scientific, clinical, and caregiver information on Lewy Body Dementia and offers phone and email helplines for caregivers.
|Multiple Sclerosis Foundation|
Offers a national toll-free helpline, online forum, and a support group directory.
|Anyone||Anyone||(888) MSFOCUS |
9:00am - 7:00pm
|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.
|National 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.
|Anyone||Anyone||(800) 770-TBTS |
|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.
|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.
|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.
|Anyone||Anyone||(800) 344-4867 |
See website for local chapter information
|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.
|Anyone||Anyone||(800) 999-6673 |
*Voice mail Only
|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.
|Anyone||Anyone||See website for local contact information||http://www.nationalpainfoundation.org|
|National Stroke Association|
Provides information and resources to stroke survivors and their families including stroke support groups and a recovery guide.
|Anyone||Anyone||(800) STROKES |
|Parkinson's Disease Foundation|
Provides a toll-free line and an online resource center to answer questions regarding Parkinson's disease.
|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.