AIM at Melanoma Foundation
Founded in 2004, AIM at Melanoma is a global foundation dedicated to finding more effective treatments and, ultimately, the cure for melanoma while improving the lives of those it affects. AIM’s global research initiatives include The International Melanoma Tissue Bank Consortium, The Melanoma International Collaboration for Adaptive Trials, and the International Melanoma Working Group. AIM at Melanoma provides education, connection to resources and opportunities for meaningful engagement to help patients and caregivers/families better face the challenges of melanoma.
American Brain Tumor Association
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 46 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 Partnership for Eosinophilic Disorders
The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of mothers of young children living with eosinophil-associated diseases. We are a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.
Aplastic Anemia and MDS International Foundation
The Aplastic Anemia & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal noctural globinuria (PNH), and related bone marrow failure diseases.
Bag it Educates, Supports and Empowers cancer patients, families, and care partners through patient education materials and resources that focus on self-advocacy and survivorship. Bag It empowers patients to talk to their healthcare providers, ask questions, track and organize their medical information and serve as the most important advocate on their care team.
BMT InfoNet (Blood & Marrow Transplant Information Network)
BMT InfoNet is a not-for-profit 501(c)3 organization dedicated to providing patients and their loved ones with emotional support and high quality, easy-to-understand information about blood stem cell transplants (bone marrow, peripheral blood, and cord blood) and other cellular therapies.
Bristol Myers Squibb
At Bristol Myers Squibb, we are inspired by a single vision – transforming patients’ lives through science. We are in the business of breakthroughs - the kind that transform patients’ lives through life-saving, innovative medicines. We have the most talented people in the industry who come to work every day dedicated to our mission of discovering, developing and delivering innovative medicines that help patients prevail over serious diseases.
Cancer Support Community
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. We are a global non-profit network of 175 locations, including CSC and Gilda's Club centers, hospital and clinic partnerships, and satellite locations that deliver more than $50 million in free support and navigation services to patients and families.
Community Oncology Alliance (COA)
The Community Oncology Alliance (COA) is a non-profit organization dedicated to advocating for community oncology practices and, most importantly, the patients they serve. COA is the only organization dedicated solely to community oncology where the majority of Americans with cancer are treated. The mission of COA is to ensure that cancer patients receive quality, affordable, and accessible cancer care in their own communities. More than 1.5 million people in the United States are diagnosed with cancer each year and deaths from the disease have been steadily declining due to earlier detection, diagnosis, and treatment.
ELPA - European Liver Patients' Association
ELPA’s aim is to promote the interests of people with liver disease and in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonized across Europe to the highest standards.
EU-IPFF European Idiopathic Pulmonary Fibrosis & Related Disorders Federation
The EU-IPFF is registered in Belgium as an International Non-Profit Organisation. Founded in 2016 by a European group of patients and advocates, it currently has a membership of 22 groups from 16 European countries. Its mission is based around the European IPF Patient Charter that was drafted by the founding patients in 2014. In summation the EU-IPFF serves to act as a unified voice for our members and the patients suffering from the many forms of Pulmonary Fibrosis. Alongside the many ERS members who form our Scientific Advisory Board we strive to improve the diagnosis, support of patients as laid out within the Patient Charter and to see it adopted across the nations.
European Cancer Patient Coalition
European Cancer Patient Coalition (ECPC) is the voice of cancer patients in Europe. With over 450 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 28 EU member states and many other European and non-European countries. ECPC represents patients affected by all types of cancers, from the rarest to the most common.
Fatty Liver Foundation
My Mission - To save my life. When I learned that there was no treatment for my disease and wouldn't be without clinical trials, which are impossible without patients, I decided to get more patients who could be in those trials by sponsoring screening.
Hepatitis B Foundation
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Our commitment includes funding focused research, promoting disease awareness, supporting screening, immunization, and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.
IFPA International Federation of Psoriasis Associations
The International Federation of Psoriasis Associations (IFPA) is a non-profit organization uniting national and regional psoriasis associations from around the world. Psoriasis and psoriatic arthritis affect millions of people across the world. This is a serious global health challenge, with a range of unmet needs. People with psoriasis or psoriatic arthritis may struggle to get a correct diagnosis or adequate treatment, have limited access to care or face persistent stigma and discrimination. Since our founding in 1971, we have worked to resolve these challenges facing the international psoriasis community.
International Association for the Study of Lung Cancer
The International Association for the Study of Lung Cancer (IASLC) is the only global network dedicated solely to the study and eradication of lung cancer and other thoracic malignancies. Since its founding in 1974, the association’s membership has grown to more than 8,000 lung and thoracic cancer specialists from all disciplines and more than 100 countries.
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
The International Waldenstrom’s Macroglobulinemia Foundation ((IWMF) is a patient-founded and patient-driven international nonprofit organization with a simple but compelling vision and mission. OUR VISION: A world without WM (Waldenstrom’s macroglobulinemia) OUR MISSION: Support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) while advancing the search for a cure.
Our mission is to abolish Kidney Cancer as a threat to the life and health of patients by supporting patient advocacy and research by offering direct financial support for clinical and laboratory researchers with promising ideas.
Lupus and Allied Diseases Association, Inc.
The Lupus and Allied Diseases Association (LADA) was founded in 1978 in Utica, NY and is dedicated to enhancing quality of life by engaging and empowering individuals impacted by lupus and allied diseases and other conditions of unmet need. As a passion-driven charity led by people with lupus and their loved ones, we work to ensure that the patient perspective is included as an equal stakeholder in the healthcare, regulatory and public policy arenas and across the research continuum.
Melanoma Research Foundation
The Melanoma Research Foundation (MRF) is the largest independent organization devoted to melanoma. Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients and physicians about prevention, diagnosis and the treatment of melanoma. The MRF is an active advocate for the melanoma community, helping to raise awareness of this disease and the need for a cure. The MRF’s website is the premier source for melanoma information seekers.
Mesothelioma Applied Research Foundation
The Mesothelioma Applied Research Foundation is the only nonprofit organization dedicated to ending mesothelioma, and the suffering caused by this cancer, by funding research to improve treatment options; providing treatment support and education for patients and their families; and investing in research.
Prevent Cancer Foundation
The Prevent Cancer Foundation is one of the nation's leading voluntary health organizations and the only U.S. nonprofit organization focused solely on cancer prevention and early detection. Founded in 1985, it has catapulted cancer prevention to prominence and fulfils its mission through research, education, outreach and advocacy.
A registry to investigate how COVID-19 affects people with rare diseases. People with rare diseases are doubly vulnerable to COVID-19: on the one hand, many of these pathologies put patients' health at a higher risk during a SARS-CoV-2 infection, and, on the other, confinement and lack of medical care due to the saturation of certain health services are making it difficult to treat these patients. If little is known about how this new infectious disease affects people without previous pathologies, even less is known about the effect of COVID-19 in people with unknown rare diseases.
The European Patients’ Academy on Therapeutic Innovation (EUPATI)
EUPATI is the only dedicated training provider for patients and patient representatives on the end to end process of medicines research and development. Trained patient experts are the core resource for patient involvement in medicines R&D, regulatory deliberations, and other patient engagement initiatives. EUPATI is committed to changing the face of patient engagement through patient education.
The V Foundation for Cancer Research was founded by ESPN and legendary basketball coach Jim Valvano with one goal in mind: to achieve Victory Over Cancer®. Since its formation in 1993, the V Foundation has awarded more than $260 million in cancer research grants nationwide and has grown to become one of the premier supporters of cutting-edge cancer research. Due to generous donors, the Foundation has an endowment that covers administrative expenses.