Upequity believes that it takes a united effort to truly impact lasting change. We have developed and will continue to build key partners in rare disease, chronic disease, health equity, research, education, policy and other areas that support and align with our purpose.
We proudly recognize our alignment and partnership with the following groups:
RDII is a global nonprofit focused on educating, engaging and equipping the rare disease community. Through policy, tools and data we achieve a higher quality of life, accelerating diagnosis and enabling access and treatment. RDII is Upequity’s go-to state policy partner. We work collaboratively to provide the evidence gathered in our research and lab to our RDII partnership, delivering on our intent to contribute to state and policy change that improves the lives of families with rare and chronic diseases.
More about RDII at: rdii.org
The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition (RDDC) in 2020 to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. Members of the Upequity team have been involved in this coalition since inception leading, advising and supporting working groups and serving on the national steering committee.
More about RDDC at: rarediseasediversity.org
Females Are Important to be Recognized (FAIR) Coalition
The FAIR Coalition exists to build a movement to advance the equitable access to diagnosis, care, and treatment for females with bleeding disorders. FAIR is a convener, bringing together, encouraging, and championing the work of all parties interested in supporting efforts to improve or build systems that serve medically underserved females with bleeding disorders.
Rare & Ready is a genetic condition coalition that believes state policies must make sure that patients with rare or genetic conditions can get the care they need. Patients deserve access to new FDA-approved therapies as soon as they are available. There is a need to mitigate state Medicaid program hurdles that limit access.
More about Rare and Ready at: rareandready.org
Upequity is a member of Global Gene’s Global Advocacy Alliance. Global Genes is committed to providing information, resources and connections to all communities affected by rare disease. Member partners include nonprofit, government, academic, research, service, and industry organizations that believe collaboration is the key to positive change.
More about GAA at: globalgenes.org/global-advocacy-alliance/
The International Children’s Advisory Network is a worldwide consortium of children’s advisory groups. It’s dedicated youth member groups work in unison around the world to provide a voice for children and families in medicine, research, and innovation.
More about iCAN at: icanresearch.org
The Coalition for Hemophilia B strives to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach. The organization is a national non-profit that is dedicated to fostering a diverse, equitable, and inclusive experience for everyone across our organization, both internally and externally.
More about Coalition for Hemophilia B at https://www.hemob.org.