Announcements

FCF board director named Global Genes interim CEO

Global Genes recently announced Craig Martin, Board Director for the Fibrolamellar Cancer Foundation, as Global Gene’s interim CEO. Craig’s leadership in research and patient support for rare diseases has been, and will continue to be a significant benefit to the fibrolamellar community.

“This is both an exciting and pivotal time for the rare disease community,” said Craig.  “There are a lot of of promising advancements in science and technology being developed that could lead to better understanding, diagnosis and treatment of rare diseases. But there are also a few key issues that could harm patients by limiting access to care and treatment. I’m pleased to be working with a talented team at Global Genes to help make sure we keep rare patients’ and communities’ interests and needs front and center at this really important moment.”

Click here to read the complete press release.

About Global Genes®
Global Genes is a 501(c)(3) nonprofit organization that connects, empowers and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere.  Global Genes provides hope for the more than 400 million people affected by rare disease around the globe.  They fulfill their mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, and stand up, stand out and become effective advocates on their own behalf.  For more information, visit globalgenes.org.