Partnerships are key to achieving our mission and improving healthcare outcomes for those with complex health conditions. By uniting with organizations that align with our mission, we can leverage diverse expertise and resources to address health challenges more effectively. These relationships are imperative for driving innovation, expanding access to care, and delivering comprehensive solutions that lead to better health outcomes for the communities we serve.
Allies are primarily disease-specific patient advocacy organizations and community-based organizations. These relationships allow Accessia Health to leverage established connections with community groups to help extend our reach into key communities, amplify patient voices, and build trust through mutual support and shared values.
The Acid Maltase Deficiency Association was established in 1995 to assist in funding research and to promote public awareness of Pompe disease. Pompe disease is one of a family of 49 rare genetic disorders known as Lysosomal Storage Diseases or LSDs. Pompe disease is also known as Acid Maltase Deficiency or Glycogen Storage Disease type II. It affects an estimated 5,000 to 10,000 people in the developed world.
The Virginia Association of Free and Charitable Clinics supports and advocates for member clinics that provide access to quality care for the state’s underserved population. These clinics often operate under a volunteer staffing model to offer essential healthcare services including medical, dental, vision, and behavioral. Accessia Health is a supporting partner of the organization and supports the work of clinics throughout the Commonwealth of Virginia to improve healthcare outcomes for those who need it most.
It is the mission of the Fabry Support & Information Group (FSIG) to raise awareness of Fabry disease and its symptoms, to advocate for community needs and to lead the fight for the most effective treatment possible and eventually a cure. FSIG provides a link for the Fabry community to information, each other, the medical community, researchers, the pharmaceutical industry and regulatory authorities. FSIG strives to support affected families and individuals lead fuller lives.
Gaucher Community Alliance (GCA) is a 501(c)(3) non-profit organization for the patient community by the patient community. Their mission is to support patients with Gaucher disease and their families through peer-to-peer support and education, advocacy, patient and family resources, and networking. Increased collaboration and emotional support among patients living with all types of Gaucher disease may alleviate some of the burden associated with this rare disorder.
The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Their vision is to empower a future fueled by data, guiding the journey toward cures for rare diseases.
The US Hereditary Angioedema Association (HAEA) is a 501 (c)(3) non-profit advocacy and research organization serving people living with the rare genetic condition, Hereditary Angioedema (HAE), and their families. Founded and staffed by people with HAE and caregivers, the US HAEA is committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness.
Accessia Health’s Collaborative Network is comprised of organizations with a shared commitment to improving health equity and outcomes for people with rare and chronic conditions. These relationships are built on mission alignment and mutual benefit, without formal partnership structure. Collaborators may include national coalitions, professional networks, and organizations where Accessia Health holds membership or active participation.
The All Copays Count Coalition unites dozens of healthcare advocacy organizations that represent individuals with chronic conditions. Such conditions require ongoing medical attention and medications that are costly. Collectively, members including Accessia Health advocate for policies requiring all copayments, regardless of source, to count toward patients’ insurance deductibles and out-of-pocket limits.
The Community Congress, powered by EveryLife Foundation, is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and initiatives. It comprises four permanent working groups that meet at least quarterly to advance federal and state legislative and regulatory policy solutions for the rare disease community.
The Global Genes Global Advocacy Alliance is a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare disease. Together, more than 700 organizations from around the world are working to build awareness for rare diseases, create community & support networks, increase education on specific rare diseases, work toward treatments and/or cures, propel research forward, and meet specific needs of people with rare diseases through direct patient assistance programs.
Led by the National Minority Health Association, the Health is for EveryBODY campaign seeks to reshape the healthcare landscape so everyone, regardless of their background or circumstances, can access quality care.
As a Healthy People 2030 Champion, Accessia Health has demonstrated a commitment to helping achieve the Healthy People 2030 vision of a society in which all people can achieve their full potential for health and well-being across the lifespan. ODPHP recognizes Accessia Health, along with other Healthy People 2030 Champions, as part of a growing network of organizations partnering with ODPHP to improve health and well-being at the local, state, and tribal level.
A nonprofit coalition comprised of businesses and healthcare entities, Kentuckiana Health Collaborative focuses on improving health outcomes and the healthcare delivery system in Kentucky and Southern Indiana. Accessia Health is proud to work alongside health systems, nonprofits, and other health driven organizations through the Collaborative.
The National Association of Specialty Pharmacy represents all stakeholders in the specialty pharmacy industry. Their mission is to advance specialty pharmacy practice through professional education and advocacy for policies that ensure access to essential medications and services. Accessia Health is a corporate member of NASP and believes in their mission which impacts many individuals with rare and chronic conditions.
The NHC brings its 170+ members together to collaborate on improving access to affordable, quality health care while driving patient-centered health policy. As a member of NHC, Accessia Health engages with other members to address cross-cutting issues across various health-related sectors and gain insights into best practices and innovative approaches for serving their patient populations.
The Rare Disease Diversity Coalition (RDDC) is focused on reducing health disparities in the rare disease community. The Coalition brings together rare disease experts, patients, health care professionals, diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare diseases on marginalized populations.
Organizations categorized as partners of Accessia Health offer the ability to create joint solutions to address the needs of the target population and leverage knowledge and experience in the healthcare sector to improve health outcomes. Partners actively collaborate with Accessia Health on strategic initiatives, programmatic work, or systems-level impact.
Accessia Health is proud to be a member and partner of CTAC. Through various programs and advocacy initiatives, CTAC focuses on improving the lives of people impacted by serious illness who struggle with the healthcare system. As a partner in CTAC’s Louisville Community of Care Project, Accessia Health, along with several other organizations, aims to identify and address prevalent health risks within a specific zip code. This community-based project, involving faith leaders and community health workers, provides a tailored approach to address social determinants of health.
