The Care-for-Rare Alliance

Transcending Borders to Help Children with Rare Diseases

The international Care-for-Rare Alliance is a network of renowned doctors, scientists, researchers, and clinicians committed to helping children with rare diseases through translational and interdisciplinary collaboration.

Global cooperation is critical to curing rare diseases.  While the incidence of specific genetic mutations and diseases may be extremely low in one country or population, occurrences worldwide allow for more robust study, understanding of, and development of treatments for rare disease patients.   The wider our geographic reach and the stronger our ties to global partners are, the more we can share data effectively, understand disease mechanisms, and work toward treatments and cures for patients worldwide.

We support increased research on inborn errors of immunity (IEI), which may present with severe or recurrent infections, known as primary immunodeficiency diseases (PID).  With robust and growing partnerships in the Middle East, Northern Africa, Southeast Asia, and South America, many Alliance partners also focus their research collaborations on rare diseases of the blood, bone marrow, and the immune system.  One of the most successful initiatives of the Alliance is the VEOIBD Consortium.

A core value of Care-for-Rare is that every child — regardless of race, ethnicity, nationality, socioeconomic status, or religion — has access to the lifesaving diagnostics, treatments, and cures that they inherently deserve.  The global Alliance is one way we act upon this value.

The Alliance connects centers of excellence around the world with hospitals and universities in low- and middle-income countries that historically have not had access to robust resources.  Care-for-Rare is actively working to change this disparity through data-set sharing, educational collaboratives, and the future establishment of Care-for-Rare International Centers that will provide critical equipment and education to the skilled clinicians and researchers in developing nations.

If you’re inspired by our mission, please consider donating today to support our ongoing alliances and global networks.

If you’re excited about what we aim to accomplish and want to know more, please reach out to lydia.tropper@care-for-rare.org