The following are nationwide resources for individuals of all ages and families/caregivers that are living with physical disease and illness and/or mental illness. We will continue to add to this list. If you would like to share a resource with us, please email your suggestion to: [email protected].
This is not our directory. If you are looking for a care/service provider that falls into one of our categories for review, please visit our directory...coming soon. Thank you!
ALS Association: Established in 1985, The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
ALSTDI/ALS Therapy Development Institute: Stephen Heywood was diagnosed with ALS at age 29. After finding no treatment options, his brother, James Allen Heywood, realized that a gap existed in the preclinical development of therapeutics for ALS. In 1999, he founded the ALS Therapy Development Institute in the basement of his family’s Newton, MA home to bring effective treatments to people living with ALS as quickly as possible. The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS, and are the world's first and largest nonprofit biotech focused 100 percent on ALS research. Led by people living with ALS and their families, they understand the urgent need to slow and stop this disease.
Alzheimer's Association: Formed in 1980, the Alzheimer's Association advances research to end Alzheimer's and dementia while enhancing care for those living with the disease. They work on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and other dementias.
Alzheimer's Foundation: Founded in 2002 by a caregiver, the Alzheimer's Foundation of America provides education and support to individuals living with Alzheimer's disease and to their families and caregivers, and funds research toward improved treatments and a cure.
American Cancer Society: Among many services offered, ACS can help with making treatment decisions, coping with side effects, handling financial matters, caregiving, and living well after cancer. ACS also has programs and services to help manage cancer treatment and recovery and find the emotional support. All their help is free of charge.
American Brain Tumor Association: Founded in 1973, the American Brain Tumor Association (ABTA) was the first, and is now the only, national organization committed to funding brain tumor research and providing information and education on all tumor types and all age groups. For 40 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care.
American Diabetes Association: They fund research to prevent, cure and manage diabetes and deliver services to hundreds of communities. They provide objective and credible information, and give voice to those denied their rights because of diabetes.
American Parkinson's Disease Association: APDA was founded in 1961 with the dual purpose to Ease the Burden - Find the Cure for Parkinson's disease.In that time, APDA has raised and invested more than $87 million to fund research, patient services and education, and elevate public awareness. As the country's largest Parkinson's grassroots organization, APDA aims to Ease the Burden for the more than one million Americans with Parkinson's disease and their families through a nationwide network of Chapters, Information and Referral (I&R) Centers, and support groups.
Arthritis Foundation: The Arthritis Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. Their goal is to chart a winning course, guiding families in developing personalized plans for living a full life – and making each day another stride towards a cure. They support both adults and children with arthritis and also publish Arthritis Today, the award-winning magazine that reaches 4.2 million readers.
CaringInfo: a program of the National Hospice and Palliative Care Organization that provides free resources to help people make decisions about end-of-life care and services before a crisis.
Cancer Sucks: Their mission is to provide a forum for those who have lost loved ones to cancer while aggressively raising money to find a cure. Cancer Sucks is a living memorial dedicated to Donna Holland White and started by her family. The organization is run by volunteers that have all been touched by cancer and focused on raising as much money for cancer research as possible. ALL the proceeds from their events go to cancer research.
Chemocare.com: Chemocare.com is a comprehensive resource for cancer patients and their caregivers that provides chemotherapy drug and side effect information, cancer wellness information, and links to additional reliable resources and organizations. While undergoing cancer treatment at Cleveland Clinic, Scott Hamilton, an Olympic gold medalist in figure skating, discovered that it was difficult to find a reliable online resource where information about chemotherapy was presented in a clear, easy to understand and easy to locate format. As a result, his idea to create a patient friendly website was born.
Clinical Trials: ClinicalTrials.gov is a Web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The Web site is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH). Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study. Studies are generally submitted to the Web site (that is, registered) when they begin, and the information on the site is updated throughout the study. In some cases, results of the study are submitted after the study ends. This Web site and database of clinical studies is commonly referred to as a "registry and results database."
Cystic Fibrosis Foundation: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.
Engaged Patients is a national campaign under the guidance of the Empowered Patient Coalition non-profit with the vision that all patients and their loved ones have free access to the tools and the resources they need to be fully informed and participating members of their health care teams.
Locate an Ombudsman: Find an Ombudsman, Citizen Advocacy Group (CAG), or other long-term care resources in your state or territory. Citizen Advocacy Groups are concerned citizens who advocate for quality long-term care, services and supports and quality of life for residents and consumers in their locality, state or region.
- Ombudsmen are dedicated to enhancing the lives of long-term care residents and they advocate for residents' rights and quality care; educate consumers and providers; resolve residents' complaints; and provide information to the public on nursing homes and other long-term care facilities and services.
Multiple Sclerosis Association of America: Especially intriguing on this site is MSAA’s growing library of award-winning, on-demand video programming and archived webcasts. These videos bring knowledge and empowerment right into the privacy and comfort of a person's home. MSi programs feature a variety of leading neurologists, nurses, and healthcare professionals providing valuable insights and updated information on the latest advances in MS research, disease and symptom management, treatments, wellness strategies, and many other vital topics to help improve the quality of life for individuals with MS and their families. Click here to visit their library of on-demand videos and webcasts.
Muscular Dystrophy Association: MDA is the world’s leading nonprofit health organization sponsoring research seeking the causes of and effective treatments for neuromuscular diseases. MDA research grants currently are supporting more than 250 projects worldwide. On their website, you’ll find information about specific services that MDA offers and how to best utilize these many resources, which can make a critical difference in understanding, managing, and living day-to-day with neuromuscular disease.
National Alliance on Mental Illness: NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. What started as a small group of families gathered around a kitchen table in 1979 has blossomed into the nation's leading voice on mental health. Today, they are an association of hundreds of local affiliates, state organizations and volunteers who work in communities all over to raise awareness and provide support and education that was not previously available to those in need.
National Multiple Sclerosis Society: The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. With their 50-state network of chapters, the Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.
National Institute of Mental Health: The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders. NIMH is one of the 27 Institutes and Centers that make up the National Institutes of Health (NIH), the nation’s medical research agency. NIH is part of the U.S. Department of Health and Human Services (HHS). Their mission is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.
Rare Disease United Foundation: The Rare Disease United Foundation is the nation’s leading rare disease advocacy organization. They are a non-disease specific, community-based organization, working at a state-level on legislation that has a direct impact on people living with a rare disease, providing support locally, and establishing relationships at local hospitals and medical schools.
Right to Try: Over 1 million Americans die from a terminal illness every year. The FDA drug approval process can take up to 15 years. Right to Try legislation, already law in 37 states and under consideration in 13 more, gives terminally ill patients the right to try investigational medicines that have not yet received full FDA approval.
The Epilepsy Association: Is a community-based, family-led organization dedicated to improving the lives of all people impacted by seizures - whether you live with epilepsy, have a loved one with seizures or have a desire to improve lives for people impacted by epilepsy. They provide programs, services and support in communities and encourage innovation in accelerating new treatments and therapies. Among other services, this website (Epilepsy.com) offers their Find a Doctor tool if you need medical services.
The Michael J. Fox Foundation for Parkinson's Research: The Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today. Since 2000, The Fox Foundation has funded more than $450 million to speed a cure for Parkinson's disease, and 89 cents of every dollar goes to research programs.
Speed4Sarah: Check out this website that was started by someone who has ALS and is hoping to making it history. She has a great community and blog.
"I was diagnosed with ALS in 2012, after a year of random falls and unexplained muscle weakness. Though I used to be a runner, I'm now in a wheelchair. I can still find the good and the funny in every day, mainly thanks to my hilarious, sweet and massively feisty 6-year-old." - Sarah
St. Baldrick's Foundation: Every grant funded by the St. Baldrick’s Foundation is for childhood cancer research. From their first event in 2000 with a goal of 17 bald heads and $17,000, that ended with 19 bald heads and $104,000 raised; to 2016, and more than $200 million in research grant funding since 2005.
Susan G. Komen Foundation: Their mission is to save lives and end breast cancer forever. They educate, support research, and offer grants that provide financial and emotional assistance and advocate for better breast cancer policy. But in a broader sense, they empower others, ensure quality care for all, and invest in science to find the cures. Last year, Susan G. Komen’s community grants provided financial and social support for more than 50,000 families impacted by breast cancer.
Walk to End Alzheimer's: Held annually in more than 600 communities nationwide, the Alzheimer's Association Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to reclaim the future for millions! While there is no fee to register, they encourage participants to fundraise in order to contribute to the cause and raise awareness.
