Partner Organizations
Abdominal Cancers Alliance
The Abdominal Cancers Alliance is committed to improving the quality of life and length of life for abdominal cancer patients by making connections to resources and care, providing education to the public and care providers, and guiding patient and caregiver navigation throughout the cancer journey. We are the patient- and caregiver-focused central hub for education and connections to resources about peritoneal surface malignancies, including rare and advanced gastrointestinal and gynecological cancers, and the lifesaving Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (CRS/HIPEC) treatment option.
American Brain Tumor Association
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. We do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.
Founded in 1973, the American Brain Tumor Association (ABTA) was the first national advocacy organization committed to funding brain tumor research and providing information and education to patients, caregivers, and their loved ones. For 50 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.
Amyloidosis Support Groups
Amyloidosis Support Groups (ASG) was formed in 2004, made up of volunteers, for the primary purpose of starting and maintaining Face to Face Amyloidosis Support Groups throughout the United States. All ASG events are free. Prior to COVID-19, we met in 30 cities from one to three times a year for a total of about 50 meetings annually. The goal of these meetings is to educate and empower amyloidosis patients and their loved ones. We also offer closed private Facebook groups for each type of amyloidosis and webinars throughout the year for the various types of amyloidosis.
Autoimmune Association
For more than 30 years, the Autoimmune Association has been the leading advocate for the millions of people affected by autoimmune diseases through fostering and facilitating collaboration in the areas of education, public awareness, advocacy, and research.
BandHealth
BandHealth is a mobile app that connects individuals based on both their health concerns and who they are as people. The app focuses on creating meaningful peer health support relationships thanks to its quality over quantity approach.
By leveraging technology similar to popular dating apps, BandHealth matches users with patients, caregivers, mentors, and family members who not only share similar health concerns, but also align in terms of personal characteristics, such as age, location, interests, goals, and more. BandHealth endeavors to enhance the health experience by fostering connections, providing resources, and facilitating a sense of community among individuals facing similar health challenges.
Be the Match
For the thousands of people diagnosed every year with life-threatening blood cancers like leukemia and lymphoma, a cure exists. Over the past 30 years Be The Match®, operated by the National Marrow Donor Program® (NMDP), has managed the largest and most diverse marrow registry in the world. We work every day to save lives through transplant.
Black Women for Wellness
Black Women For Wellness is committed to the health and well-being of Black women and girls through health education, empowerment and advocacy. Our work includes a broad spectrum of focus areas to include programs dedicated to focusing on the direct needs of our community.
Sisters in Control Reproductive Justice Program supports policy, utilizes programs, works with advisory councils, commissions and boards to secure reproductive justice for women and girls.
Environmental Justice Program engages and educates community members to influence local, state and national policies that regulate the safety of chemical use in cosmetics and personal care products as it relates to their health and outcomes linked to environmental exposures and toxins that can be attributed to certain chronic diseases such as breast cancer.
Blood & Marrow Transplant Information Network
The Blood & Marrow Transplant Information Network provides answers, advice and a caring companion throughout your transplant journey. Our website is your gateway to detailed information about what to expect before, during and after your transplant. Popular features including: an in-depth information about each step of the transplant process, potential complications and practical solutions; emotional support for patients, survivors and caregivers; facts about more than 200 transplant centers in the U.S., including staff, number of transplants performed, accreditation and diseases treated; and extensive information for survivors about how to live well after transplant.
Caring Bridge
CaringBridge is a nonprofit social network that helps you connect with your family and friends during a health journey. It is an online platform with simple tools for patients and caregivers to share health updates, and for their community to offer support and encouragement. Confronting an illness or injury is one of the most demanding, isolating things you can do. Family and friends are an amazing source of support, but constantly sharing updates with each and every one of them is impractical. CaringBridge replaces countless texts and emails with a free, easy-to-use communications platform. For more than 25 years, CaringBridge has made it simple and safe to offer or ask for support when it’s needed most. Over 300,000 people use the private and ad-free platform every single day. Learn more or start your free site today at caringbridge.org.
CLOVES Syndrome Community
CLOVES Syndrome Community is the foremost patient advocacy non-profit organization supporting people affected by CLOVES Syndrome, an ultra-rare condition caused by a gain-of-function somatic change to the PIK3CA gene. CLOVES Syndrome falls under an umbrella of conditions called the PIK3CA Related Spectrum (PROS). There is no cure for PROS, and treatment options are very limited. The medications that do exist don't work for everyone, which is why continued research and advocacy are so important. CLOVES Syndrome Community's mission is to improve the lives of those affected by this condition through support, research, and education. We envision a world where everyone with CLOVES Syndrome can lead long, vibrant lives, supported by access to excellent medical care and effective treatment options. To learn more about CLOVES Syndrome, get involved, or become one of our amazing donors, visit www.clovessyndrome.org.
Crohn's & Colitis Foundation
Crohn's & Colitis a non-profit, volunteer-fueled organization dedicated to finding cures for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases. Since our founding in 1967, the Foundation has played a role in every major breakthrough in IBD research. We have invested more than $500 million into finding the causes, treatments, and cures for Crohn’s disease and ulcerative colitis. And we won’t stop until we realize our vision of a future free from Crohn’s and colitis.
Diverse Health Hub
Diverse Health Hub (DHH) is a health equity awareness organization committed to dismantling barriers that create health disparities so that ALL patients have access to better health outcomes.
The Health Equity Emissary Team (HEET) is a special-ops peer network embedded within Diverse Health Hub spotlighting global health inequities. HEET is led by a health advocacy think tank with a multiplicity of backgrounds made up of diverse advocates working directly with key stakeholders and health advocacy organizations throughout the healthcare industry who desire to address health disparities, impact health outcomes and focus on the needs of diverse health communities. HEET raises awareness through the production of diverse and dynamic educational content. We develop resources for health communities and providers to increase cultural competency and to promote agency for optimal health outcomes.
Do It For The Love
Do It For The Love is a nonprofit wish-granting foundation that brings people living with life-threatening illnesses, children with severe challenges, and wounded veterans to live concerts. Founded in 2013 by musician Michael Franti and ER nurse Sara Agah, Do It For The Love has, to date, granted more than 500 wishes, working with a wide variety of musicians. Through the healing power of music, our goal is to inspire joy, hope, and lasting celebratory memories in the face of severe illness or trauma.
Dollar For
Dollar For is a national nonprofit that crushes medical bills by empowering patients and advocating on their behalf. The 2010 Affordable Care Act requires nonprofit hospitals to offer charity care programs to keep their tax-exempt status. These financial assistance programs reduce or eliminate medical bills for low-to-middle income patients. Dollar For makes charity care known, easy, and fair. We help patients check if they are eligible for financial assistance, prepare and submit applications, and get hospital medical bills forgiven. Our services are completely free⸺no strings attached.
EmergingMed
EmergingMed is the leading innovator in clinical trial enrollment optimization. Our company was founded in 2000 to accelerate the discovery of new and better treatments for people with serious and life threatening medical conditions. We provide services for patients that raise awareness and facilitate access to clinical trials. These patient-focused services are part of the broader solution EmergingMed hosts for clinical trial sponsors and investigators to overcome barriers in the “last mile” of enrolling patients in clinical trials.
EmergingMed received a patent on its System and Method for Matching Patients to Clinical Trials (US Patent No. 7,711,580 B2) in May of 2010. This matching system shortens the clinical trial search process from weeks to minutes, helping users identify clinical trials with eligibility criteria that match a patient’s specific diagnosis, stage, symptoms, and treatment history.
Over the years, we have facilitated clinical trial searches for nearly 500,000 patients with cancer and other serious and life threatening conditions.
Fanconi Anemia Research Fund
The Fanconi Anemia Research Fund (FARF) is the world leader in advancing research for better treatments and a cure for Fanconi anemia, a rare DNA repair disorder and cancer-susceptibility disease. Founded in 1989 by parents Lynn and David Frohnmayer, FARF has supported more than $33 million in research related to gene discovery, bone marrow failure, DNA repair, and cancer. The Fanconi Anemia Research Fund’s mission is to find effective treatments and a cure for Fanconi anemia (FA) and to provide education and support to affected families worldwide. We envision a future in which we can prevent and/or eliminate the primary causes of death and disability in people with FA, enabling them to live full and productive lives. To us, the best way to do this is by funding research.
Donations have helped us advance FA science more rapidly than ever thought possible. For example, no FA genes had been identified in 1989. Today, 23 genes have been discovered. Hematopoietic cell transplant success rates for FA patients have risen from 0% in 1989 to over 90% in transplant centers that specialize in Fanconi anemia. Now, our focus is on preventing and treating cancer, since individuals with FA are 500-700 times more likely to develop cancer than people without FA.
Global Liver Institute
Global Liver Institute's mission is to improve the lives of individuals and families impacted by liver disease through promoting innovation, encouraging collaboration, and scaling optimal approaches to help eradicate liver diseases.
HealthWell Foundation
A nationally recognized, independent non-profit organization founded in 2003, the HealthWell Foundation has served as a safety net across over 85 disease areas for more than 822,000 underinsured patients. Since its inception, HealthWell has provided over $3.3 billion in financial support through more than 1.3 million grants to access life-changing medical treatments patients otherwise would not be able to afford. HealthWell provides financial assistance to adults and children facing medical hardship resulting from gaps in their insurance that cause out-of-pocket medical expenses to escalate rapidly; HealthWell assists with the treatment-related cost-sharing obligations of these patients. HealthWell ranked 34th on the 2022 Forbes list of The 100 Largest U.S. Charities and was recognized for its 100 percent fundraising efficiency.
National Alliance for Caregiving (NAC)
Established in 1996, NAC is a dedicated to improving quality of life for friend and family caregivers and those in their care, by advancing research, advocacy, and innovation.
NAC recognizes that families provide important societal and financial contributions toward maintaining the well-being of those in their care. Beyond their work in Washington, they work to enhance the capacity of the caregiving movement. NAC provides technical assistance to a national network of caregiving coalitions representing nearly 30 states and localities in the United States and serves as Founder and Secretariat for the International Alliance of Carer Organizations (IACO).
National Bone Marrow Transplant Link
The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital educational information and personalized support services.
If you would like to reach out to the nbmtLINK direct, you can email info@nbmtlink.org.
NeedyMeds
NeedyMeds is a national non-profit that connects people to programs that will help them afford their healthcare expenses. They do that free and anonymously through a website (NeedyMeds.org) and helpline (1-800-503-6897.) More than 1.3 million patients, caregivers, healthcare professionals, social workers and patient advocates use the NeedyMeds website each year and the call center receives approximately 4,000 calls per month. All the information is regularly updated, accessible online, at no charge and without registration
NeedyMeds also offers a Drug Discount Card that can be used to save on prescriptions, over-the-counter medications and supplies written as prescriptions, medical equipment and human equivalent pet meds. Their Drug Discount Card is accepted at more than 65,000 pharmacies nationwide.
Patient Access Network (PAN) Foundation
The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications.
Since its founding in 2004, the PAN Foundation has provided nearly 1 million underinsured patients with grants to help with their out-of-pocket costs through nearly 70 disease-specific programs and transportation assistance.
Check your eligibility and apply today.
Patients Rising
At Patients Rising we research programs and services to help solve people’s problems. For instance, during the Coronavirus lockdowns many Americans came face to face with completely new challenges, like food and housing insecurity, loss of work and health insurance, or difficulty finding a safe place to get treatments for their chronic or rare diseases. The Helpline Navigators were there, fielding emails and calls, helping connect people locally, or on the State or Federal level with the services that could solve their problems. We’ve become experts at finding existing solutions and teaching patients, caregivers, and allies how to do the same, all at no charge. We're here to help. Call us at 800-685-2654 or email us at HELP@PatientsRising.org
Therapy for Black Girls
Therapy for Black Girls is dedicated to sustaining and growing an engaged community centered on the mental health needs of Black women and girls. We do this by creating resources, content, and experiences to present mental health information in a way that feels relevant and accessible.
Upsolve
Upsolve is a nonprofit tool that helps individuals file for bankruptcy for free. Think TurboTax for bankruptcy. Use Upsolve to wipe away debts from exorbitant medical bills, credit cards, job loss, and other financial shocks.
ZaggoCare
Roberta Carson started Zaggo, a nonprofit organization, to help patients and family caregivers manage illnesses and injuries, after her experience as caregiver for her teenage son Zachary during his battle with terminal brain cancer. The unique, award-winning ZaggoCare System provides patients and families with the educational information, tools, and resources they need to become empowered, engaged, effective members of their medical teams for the best possible care. Additionally, the Zaggo blog offers helpful advice for patient and family caregivers. 100% of the profits from the sale of ZaggoCare are donated to pediatric brain tumor research in memory of Zachary.