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Global Genes announces partnership with CureJM Foundation to expand support in rare disease community for mental health related challenges

May 11, 2023

The rare disease patient advocacy organization Global Genes has partnered with Cure JM Foundation to work together on a two-year mental health initiative.

Global Genes is committed to improving the health and mental well-being of the rare disease community that it serves. This partnership with Cure JM will provide educational tools and support for patients and developing communities, two of the three foundational pillars that support Global Genes’ mission. Through this collaboration, the tools and resources CureJM has already developed will be made more widely available via the Global Genes partnership.

“Mental health is an often-neglected aspect of living with a rare disease,” said Charlene Son Rigby, CEO of Global Genes. “Through this initiative we will leverage and expand on the relevant work already developed by Cure JM, to benefit the broader community of patients and their families living with a rare disease.”

The two organizations will support the distribution and availability of mental health-related resources and tools created by Cure JM through their websites, development of webinars, participation at existing events, and interactions through Global Genes’ online community, RARE Portal. In addition, RARE Concierge, the Patient Services team at Global Genes, will leverage the expertly developed and curated resources that Cure JM has cultivated for those seeking mental health support. This partnership will represent best practices around mental health in the rare disease community, and both organizations hope it will serve as a model for other patient advocacy groups for future collaborations.

Research has shown the vast majority of people with a rare disease experience depression, stress, and anxiety related to their conditions. Even so, healthcare professionals often neglect this aspect of living with a rare disease.

“We know rare disease patients face mental health issues at a greater rate than others, but often they suffer in silence,” said Jim Minow, executive director of the Cure JM Foundation. “This partnership will not only raise awareness about this problem but provide patients with tools and resources for them to get the help they need.”

Anyone seeking mental health assistance can reach out to RARE Concierge, the Global Genes patient services team, who can provide the tools and resources needed, including those offered by Cure JM Foundation.

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.

About Cure JM Foundation
Founded in 2003, Cure JM Foundation is a 501c(3) non-profit funding research for a cure for juvenile myositis (JM), a rare autoimmune disease in which the body’s immune system attacks its own cells and tissues. JM affects approximately 2-4 of every million children in the US. Cure JM provides education, resources, and support to families and grants to researchers to find better treatments and a cure for JM.

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