Community Resources A-H

Aging

AARP

Contact Information: 

https://www.aarp.org/caregiving/?intcmp=AE-CAR-LRS-IL

1-877-333-5885, online form required for email

Organization Purpose: AARP’s Family Caregiving site provides information, tools and resources to help those caring for a loved one on their journey. Caregiving experts provide information in blogs, webinars and one-on-one interaction through social media channels. The site’s supportive online community can help you connect with others experiencing similar caregiving challenges. Best of all, most of this content is accessible even if you aren’t a member of AARP.

AIDS

American Foundation for AIDS Research

Contact Information

https://www.amfar.org/

(212) 806-1600, online form required, Organization Purpose: amfAR, The Foundation for AIDS Research, is one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and advocacy. Since 1985, amfAR has invested nearly $550 million in its programs and has awarded more than 3,300 grants to research teams worldwide.

ALS

American Foundation for AIDS Research

Contact Information

https://www.amfar.org/

 (212) 806-1600, online form required

Organization Purpose:

AmfAR, The Foundation for AIDS Research, is one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and advocacy. Since 1985, amfAR has invested nearly $550 million in its programs and has awarded more than 3,300 grants to research teams worldwide.

The ALS Association

Contact Information

http://www.alsa.org/

 (800) 782-4747, online form required

Organization Purpose:

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

The Robert Packard Center for ALS Research at Johns Hopkins

Contact Information:

https://www.packardcenter.org/

410-955-8635 , sconnel6@jhmi.edu

Organization Purpose:

Our mission is to fund and support ALS research around the world. Our goal is to find a cure.

Alzheimer's

Alzheimer’s Foundation of America

Contact Information:

https://alzfdn.org/

866-232-8484, info@alzfdn.org

Organization Purpose:

The mission of the Alzheimer’s Foundation of America (AFA) is to provide support, services and education to individuals, families and caregivers affected by Alzheimer’s disease and related dementias nationwide, and fund research for better treatment and a cure.

Alzheimer’s AssociationContact Informationhttps://www.alz.org/, 800-272-3900, complete online form, Organization Purpose: The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Alzheimer’s Disease Education and Referral CenterContact Informationhttps://www.nia.nih.gov/health/alzheimers, 800-438-4380, adear@nia.nih.gov, Organization Purpose: Alzheimer’s and related Dementias Education and Referral (ADEAR) Center can help you with answers and resources.

Arthritis

Arthritis Foundation

Contact Information:

https://www.arthritis.org/

404-872-7100, Helpline: 1-844-571-help

Organization Purpose:

The Arthritis Foundation is boldly pursuing a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy and community connections.

Johns Hopkins Arthritis Center

Contact Information:

https://www.hopkinsarthritis.org/

410-955-5000, online form required.

Organization Purpose:

We are dedicated to providing quality education to patients and healthcare providers alike. As part of our mission we train Fellows, residents, and students to understand the complexities of arthritis and to become future leaders in the field.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

Contact Information:

https://www.niams.nih.gov/

877-22-NIAMS, NIAMSinfo@mail.nih.gov

Organization Purpose:

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.

Asthma & Allergy

Asthma & Allergy Foundation of America

Contact Information:

https://www.aafa.org/

1-800-727-84621-800-727-8462, online form required.

Organization Purpose: 

Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is the leading patient organization for people with asthma and allergies, and the oldest asthma and allergy patient group in the world.

Attention-Deficit Disorders (ADD/ADHD)

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)

Contact Information

https://chadd.org/

301-306-7070, customer_service@chadd.org

Organization Purpose:

We believe in improving the lives of people affected by ADHD.

Autoimmunity

American Autoimmune Related Diseases Association

Contact Information

https://www.aarda.org/

(586) 776-3900, aarda@aarda.org

Organization Purpose:

The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.

Lupus Foundation of America

Contact Information

https://www.lupus.org/

202-349-1155, info@lupus.org,

Organization Purpose:

Lupus Foundation of America research is anchored in what matters: Improving Lives. We have contributed to every major lupus research breakthrough during the past 40+ years. We’re attacking lupus from every direction and we won’t stop until lupus is cured.

Birth Defects

March of Dimes Birth Defects Foundation

Contact Information

https://www.marchofdimes.org/

888-663-4637, online form required,

Organization Purpose:

March of Dimes leads the fight for the health of all moms and babies. We believe that every baby deserves the best possible start. Unfortunately, not all babies get one. We are changing that.

Blindness

The Foundation Fighting Blindness

Contact Information

https://www.fightingblindness.org/

 800-683-5555, info@FightBlindness.org,

Organization Purpose:

The Foundation’s goal was clear: To drive the research that would lead to preventions, treatments and vision restoration for the degenerative retinal diseases – including macular degeneration, retinitis pigmentosa, and Usher syndrome – that together affect more than 10 million Americans and millions more throughout the world.

The National Library Service for the Blind and Print Disabled

Contact Information

https://www.loc.gov/nls/

Telephone: 202-707-5100
Toll-free: 800-424-8567
Fax: 202-707-0712

Mailing Address:
The National Library Service for the Blind and Print Disabled
Library of Congress
Washington, DC 20542-4962

Street Address:
1291 Taylor Street, NW
Washington, DC 20542

Organization’s Purpose:

The National Library Service for the Blind and Print Disabled (NLS), Library of Congress, administers a free national library program that provides braille and recorded materials to people who cannot see regular print or handle print materials. Established by an Act of Congress in 1931 to serve blind adults, the program was expanded in 1952 to include children and individuals with other physical disabilities that prevent reading regular print.

NLS selects books and magazines for full-length publication in braille, ebraille, and digital audio format. Reading materials are circulated through a network of libraries. The materials and free playback equipment needed to read audiobooks (called talking books) and magazines are circulated to patrons by libraries by postage-free mail. Digital audio and ebraille materials also are available through the NLS BARD (Braille and Audio Reading Download) service and the BARD Mobile app for iOS and Android devices.

Brain Injury

Brain Injury Association of America

Contact Information

https://www.biausa.org/

  1-800-444-6443, info@biausa.org

Organization Purpose:

To advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury.

Brainline

Contact Information

https://www.brainline.org/

703.998.2020, info@brainline.org

Organization Purpose:

BrainLine is a national multimedia project offering authoritative information and support to anyone whose life has been affected by brain injury or PTSD: people with brain injuries, their family and friends, and the professionals who work with them.

Brain Trauma Foundation

Contact Information

http://www.braintrauma.org/

online form required

Organization Purpose:

BTF focuses on conducting innovative clinical research, updating its evidence-based guidelines, and working towards its goal of improving outcomes for the millions of people who suffer from traumatic brain injuries every year.

Brain Tumor

American Brain Tumor Association

Contact Information

https://www.abta.org/about-the-abta

773-577-8750, 773-577-8738, 800-886-2282, info@abta.org

Organization Purpose:

The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.

Brain Trauma Foundation

Contact Information

http://www.braintrauma.org/

complete online form,

Organization Purpose:

Since our founding in 1986, we have worked toward our vision of improving the outcomes of patients with traumatic brain injuries. We do this through the development of our best-in-class, evidence-based guidelines, groundbreaking research partnerships, and educational outreach.

Cancer

Written by Tom Read, Updated 9/23/23

https://www.mysticmag.com/news/resources-for-cancer-survivors/

Looking for cancer related resources? This article gives you over 100 to consider. Take a look. 

American Cancer Society

Contact Information

http://www.cancer.org/

800-227-2345, sign up for email on line,

Organization Purpose:

At the American Cancer Society, we’re on a mission to free the world from cancer. Until we do, we’ll be funding and conducting research, sharing expert information, supporting patients, and spreading the word about prevention. All so you can live longer — and better.

Cancer and Careers

Contact Information

https://www.cancerandcareers.org/en

646-929-8032, cancerandcareers@cew.org

Organization Purpose:

Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools and educational events.

Cancer Financial Assistance Coalition

Contact Information

https://www.cancerfac.org/

online form required,

Organization Purpose:

CFAC is a coalition of organizations helping cancer patients manage their financial challenges.

Cancer Research and Prevention Foundation

Contact Information

https://preventcancer.org/

(800) 227-2732 (703) 836-4412, online form required

Organization Purpose: The mission of the Prevent Cancer Foundation® is saving lives across all populations through cancer prevention and early detection.

Cancer Support Community

Contact Information

https://www.cancersupportcommunity.org/

888-793-9355 / 202-659-9709, online form required

Organization Purpose:

Our mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.

Cancer.Net

Contact Information

https://www.cancer.net/

8:30am and 5:00pm ET at 888-273-3508 or 703-519-1430

contactus@cancer.net,

Organization Purpose:

The best cancer care starts with the best cancer information. With nearly 45,000 members who are leaders in advancing cancer care, the American Society of Clinical Oncology (ASCO) is the voice of the world’s cancer physicians. ASCO’s patient information website — Cancer.Net (www.cancer.net) — brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. Well-informed patients are their own best advocates and invaluable partners for physicians. Cancer.Net provides timely, comprehensive information to help patients and families make informed health care decisions. Cancer.Net is supported by Conquer Cancer ® The ASCO Foundation.

CancerCare

Contact Information

https://www.cancercare.org/

800-813-hope(4673), online form required,

Organization Purpose:

Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer.

Help for Cancer Caregivers

Contact Information

https://www.helpforcancercaregivers.org/

online form required, online form required,

Organization Purpose:

Help for Cancer Caregivers is a unique collaboration of organizations with a shared goal of improving the health and well-being of the people who care for people with cancer. Please be sure to tell any caregivers you know about this site.

Mesothelioma Web

Contact Information

https://www.mesotheliomaweb.org/

1-877-367-6376, online form required,

Organization Purpose:

For those diagnosed with mesothelioma, an asbestos-related cancer of the lining of the lung (pleura) or the lining of the abdominal cavity (peritoneum), finding a credible source of information about the disease itself and the medical options available, is of the highest priority. After years of research and synthesis of information, we have assembled a web site and packet for patients and their loved ones. We hope you find this web site helpful.

National Cancer Institute (NCI) at the National Institutes of Health

Contact Information

https://www.cancer.gov/

(1-800-422-6237), NCIinfo@nih.gov

Organization Purpose:

NCI leads, conducts, and supports cancer research across the nation to advance scientific knowledge and help all people live longer, healthier lives.

National Coalition for Cancer Survivorship

Contact Information

https://www.canceradvocacy.org/

877-NCCS-YES, info@canceradvocacy.org,

Organization Purpose:

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis. That experience has value and can be a transforming, positive force. NCCS also knows that cancer survivors and those who care for them face many challenges.

The Leukemia & Lymphoma Society

Contact Information

https://www.lls.org/

(888) 557-7177, online form required,

Organization Purpose:

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

Caregiving

Caregiver Action Network

Contact Information

https://www.caregiveraction.org/

855-227-3640, info@caregiveraction.org,

Organization Purpose:

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.

Caregiver Support Services

Contact Information

https://www.caregiversupportservices.com/

866-201-6896, online form required,

Organization Purpose:

Our mission is to help people become great caregivers for the people and patients around them.

Caring Bridge

Contact Information

https://www.caringbridge.org/

651-452-7940 , CustomerCare@CaringBridge.org,

Organization Purpose:

From the launch of the very first CaringBridge site, we’ve been working toward a single vision: a world where no one goes through a health journey alone. In order to turn this vision into reality, we’ve made it our mission to build bridges of care and communication providing love and support on a health journey. 

Caring.com

Contact Information

https://www.caring.com/

800-973-1540, online form required,

Organization Purpose:

Caring.com exists to help family caregivers like you make better decisions, save time and money and feel less alone.

Family Caregiver Alliance / National Center on Caregiving

Contact Information

https://www.caregiver.org

800.445.8106 toll-free | 415.434.3388 local

Organization Purpose:

The mission of Family Caregiver Alliance (FCA) is to improve the quality of life for family caregivers and the people who receive their care. FCA provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia.Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.

National Alliance for Caregiving

Contact Information

https://www.caregiving.org/

P: +1 (202) 918-1013 , F: +1 (202) 918-1014, 

Organization Purpose:

Its mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.

Cerebral Palsy

United Cerebral Palsy

Contact Information

https://ucp.org/

202-776-0406 or (800) 872-5827, info@ucp.org,

Organization Purpose:

The purpose of the corporation shall be to promote the independence, productivity and full citizenship of people with cerebral palsy, intellectual and developmental disabilities, and other conditions, through an affiliate network.

Cerebral Palsy Guide

“It is our mission to create an easy-to-use, informative website that provides solutions for families. It is our hope that Cerebral Palsy Guide can help parents of children with cerebral palsy find peace, healing, and happiness.”

(866) 756-6035 

Cystic Fibrosis

Cystic Fibrosis Foundation

Contact Information

https://www.cff.org/

800-344-4823, online form required,

Organization Purpose:

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.

Diabetes

American Diabetes Association

Contact Information

https://www.diabetes.org/

1-800-DIABETES ((800-342-2383)), online form required,

Organization Purpose:

When a family member, especially a child, is diagnosed, it sends an emotional shockwave. What are the medical costs? What about getting proper care? How can you help manage diabetes at school? Suddenly, you have the world on your shoulders. But you also have support. There are countless ways to help your loved ones live a healthy, happy life. Reach out and ask for help. We have it for you here.

JDRF (Juvenile Diabetes Research Foundation)

Contact Information

https://www.jdrf.org/

online form required, online form required,

Organization Purpose:

JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our strength lies in our exclusive focus and singular influence on the worldwide effort to end T1D.

Dental

New Mouth

NewMouth is an informational web guide for those seeking general, orthodontic, pediatric, or specialty dental care. NewMouth is owned and funded by Dentistry Brands LLC, an informational marketing company that specializes in producing authoritative medical content based on dental literature, accredited scientific journals, and current dental research data.

Downs Syndrome

National Down Syndrome Society

Contact Information

https://www.ndss.org/

800-221-4602, info@ndss.org,

Organization Purpose:

To promote the value, acceptance and inclusion of people with Down syndrome.

Ehlers-Danlos

EDS Today

Contact Information

http://www.edstoday.org

609-625-3182, info@edstoday.org,

Organization Purpose:

The EDS Today is a voluntary, 501(c)3 organization founded in 2000. Its goal is to provide information and support to patients and families living with Ehlers-Danlos syndrome, a group of genetic connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Symptoms and findings include abnormally loose, flexible joints; thin, stretchy skin; and fragility of the skin, blood vessels, and other body tissues. EDS Today is staffed 100 percent by volunteers. All donations are used to support its mission of providing information and support to people affected by EDS and to members of the medical community working to help them.

The Ehlers-Danlos Society

Contact Information

https://www.ehlers-danlos.com

248-716-8336., online form required,

Organization Purpose:

The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

Epilepsy

Epilepsy Foundation

Contact Information

https://www.epilepsy.com/

301-459-3700, online form required,

Organization Purpose:

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

Gastrointestional

Association of Gastrointestional Motility Disorders, Inc. (AGMD)

Contact Information

https://agmdhope.org/

781-275-1300, digestive.motility@gmail.com.,

Organization Purpose:

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is an international, non-profit organization that functions as an information resource center for people affected by digestive motility disorders. The organization also serves as an integral resource for members of the medical community. AGMD was established in 1991 and was formerly known as the Association of Gastrointestinal Motility Disorders, Inc. AGMD offers three newsletters: the AGMD Beacon, AGMD Search And Research, and the AGMD Digestive Motility Forum. It also offers many other educational materials. Periodically AGMD distributes questionnaires to its members for the purpose of collecting information, which is later compiled and published in order to gain better insight into digestive motility diseases. AGMD also provides networking to its members, as well as referral lists of physicians who treat digestive motility diseases.

Crohn’s & Colitis Foundation of America

Contact Information

https://www.crohnscolitisfoundation.org/contact-crohns-colitis-foundation

800-932-2423, info@crohnscoltisfoundation.org,

Organization Purpose:

The mission of the Crohn’s & Colitis Foundation is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. Crohn’s disease and ulcerative colitis are collectively known as inflammatory bowel diseases (IBD).

Genetic and Rare Diseases

Genetic and Rare Diseases (GARD) Information Center

Contact Information

http://rarediseases.info.nih.gov/GARD/

301-251-4925, 888-205-2311, TDD
888-205-3223, online form required,

Organization Purpose:

Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD) at the National Institutes of Health, the Genetic and Rare Diseases Information Center gives health care providers and their patients immediate access to experienced information specialists who can supply current and accurate information about more than 6,000 genetic and rare diseases in English and Spanish. Information specialists answer calls Monday through Friday from 12 p.m. to 6 p.m. EST. Bilingual information specialists can speak with Spanish-speaking callers. All information requests are completely confidential.

National Organization for Rare Disorders

Contact Information

https://rarediseases.org/ 

 617-249-7300, online form required,

Organization Purpose: 

The National Organization for Rare Disorders (NORD) is the leading independent patient advocacy organization representing all individuals and families affected by rare diseases in the United States.

Hearing

Let Them Hear Foundation

Contact Information

http://www.letthemhear.org

(650) 462-3149, info@letthemhear.org,

Organization Purpose:

The Let Them Hear Foundation helps hearing-impaired individuals to H.E.A.R., specifically those lacking adequate access to funding and healthcare resources. LTHF provides Hearing services for underprivileged American youth; Education for professional and public sectors per cochlear implant hearing healthcare issues and practices; Access development for under-served persons through insurance advocacy and overseas medical missionary efforts; and Research concerning treatment for ear disease and function. Founded by the world leader in ear surgery Dr. Joseph Roberson, M.D., LTHF operates in conjunction with the California Ear Institute in Northern California.

Heart

American Stroke Association

Contact Information

https://www.stroke.org/

1-888-4-STROKE or 1-888-478-7653, email online,

Organization Purpose:

The American Stroke Association is a relentless force for a healthier world with fewer strokes — the No. 2 cause of death worldwide and a leading cause of disability. 

WomenHeart National Hospital Alliance

Contact Information

https://www.womenheart.org/

(202) 728-7199, mail@womenheart.org,

Organization Purpose:

WomenHeart’s mission is to improve the lives of women with or at risk for heart disease, while fighting for equity in heart health.

American Heart Association

Contact Information

https://www.heart.org/HEARTORG/

1-800-AHA-USA-1 or 1-800-242-8721, online form required,

Organization Purpose:

To be a relentless force for a wrold of longer, healthier lives. From humble beginnings, the AHA has grown into the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. A shared focus on cardiovascular health unites our more than 35 million volunteers and supporters as well as our more than 2,900 employees.

Hemophilia

National Hemophilia Foundation

Contact Information

https://www.hemophilia.org/

212-328-3700, info@hemophilia.org,

Organization Purpose:

The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

Huntington's

Huntington’s Disease

Contact Information

https://hdsa.org/

Helpline: 800-345-HDSA (4372) National Office: 212-242-1968, HDSAinfo@HDSA.org,

Organization Purpose:

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In the battle against Huntington’s disease no one fights alone.