PAN joins Global Genes Global Advocacy Alliance

The PAN Foundation today announced that they have become a member of the Global Genes Global Advocacy Alliance, working together to support the 400 million people living with a rare disease around the world.

The Global Advocacy Alliance is a group of more than 600 nonprofit organizations and support groups who are committed to collaborating to change the way the world tackles rare diseases. It currently takes an average of nearly five years for patients to get an accurate diagnosis, and there are few U.S. Federal Drug Administration approved treatments available.

“Supporting people living with rare diseases has been a part of PAN’s mission since our inception, and we’re thrilled to become a member of the Global Advocacy Alliance to further expand our role in supporting patients,” said PAN President and CEO Kevin L. Hagan. “We look forward to working together with this global network to connect patients and their loved ones with the resources and support they need.”

Global Genes launched the Global Advocacy Alliance in 2022 to connect, empower, and inspire the rare disease community. About 75 percent of member organizations are U.S.-based.

“We are dedicated to providing hope and help to people living with rare diseases around the world through education, resources, and research—it’s our passion,” said Global Genes CEO Charlene Son Rigby. “We are grateful that PAN shares that passion for supporting the rare disease community and are excited to have them join our Global Advocacy Alliance.”

PAN provides financial assistance and support services for nearly 70 different chronic conditions, including many rare diseases. PAN and Global Genes are both members of the Rare Disease Diversity Coalition, where they work to promote health equity and reduce barriers to health for communities of color.