Press Releases

Global Genes Launches Private Discussion Group for Rare Disease Community

January 8, 2024

Global Genes, a leading rare disease patient advocacy organization, is excited to announce our new online discussion community for people living  with rare diseases to connect with each other and discuss topics of common concern. 

The Global Genes RARE Disease Community is a private discussion group for patients, caregivers, members of non-profit patient advocacy groups. It is a place to engage in meaningful conversations and discussions about important topics in rare disease, such as mental health, financial advocacy, diversity and health equity, grieving, or gene based diagnosis and any other aspect that comes with facing rare diseases.

“We know the most common concern expressed by people living with rare diseases of their own or for a member of their family is the feeling of isolation. Finding a community who shares that experience is one of the best steps toward ending that isolation and learning from others who have been through similar struggles,” said Daniel DeFabio, Director of Community Engagement for Global Genes. “As an umbrella organization concerned with all rare diseases, Global Genes is offering an online community for this purpose just as we have offered the face to face opportunities to gather as a community for the last 12 years. This online discussion group can help rare disease patients and advocates make meaningful connections with others who are experiencing a similar health journey.”  

The Global Genes RARE Disease Community  is a place to share resources, exchange stories, and offer each other the support and understanding that only our community can provide. 

After launching in early October, the group already has more than  1,000 members. It has already become a source of connection, empowerment, and hope for patients and families facing rare disease. The stories shared, the resources exchanged, and the bonds formed have fostered understanding and compassion that has been truly extraordinary.

“Global Genes is dedicated to empowering patients and advocates,” said Charlene Son Rigby, CEO of Global Genes. “When I started advocacy efforts for my daughter, I turned to Global Genes and the Global Genes community. This new online Global Genes RARE Disease Community enables rare disease patients, caregivers and advocates to connect, learn from each other, and inspire one another.”

The Global Genes RARE Disease Community is now open for members to join. To ensure the privacy of its members all membership requests are reviewed by the group’s administrators. Interested rare disease patients, caregivers, and volunteer advocates can join the group by clicking the button below.

Join Discussion Group

About Global Genes
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of that mission, Global Genes connects, empowers, and inspires the rare disease community to stand up, stand out, and become more effective on their own behalf⁠—helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. Global Genes serves more than 400 million people around the globe, and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or through the website.