Global Genes unveils a three-pronged strategy focused on support for patients and developing communities, educational tools, and research enablement.
Aliso Viejo, Calif—FEBRUARY 7 —The rare disease patient advocacy organization Global Genes today announced it has completed its merger with the nonprofit data-sharing platform RARE-X and unveiled a three-pronged strategy for the combined organization that focuses on providing tools, connections, and opportunities to meet the needs of next-generation advocacy.
“The landscape of rare disease is changing, bringing new opportunities for members of the rare disease community, whether they are newly diagnosed, living with a rare disease, or involved in drug discovery and development,” said Charlene Son Rigby, CEO of Global Genes. “The combination of Global Genes and RARE-X provides individuals, families, and advocates with an integrated set of essential services to help them raise support and awareness, accelerate the development of treatments, and power those efforts with data.”
Son Rigby said going forward, Global Genes is organizing its work around three pillars: support for patients and developing communities, educational tools, and research enablement.
RARE Concierge, Global Genes’ patient services arm, continues to be the first point of contact for many undiagnosed and newly diagnosed patients and families looking for answers, access to genetic counseling and testing, specialized care, clinical trials, resources, support, and connection. In 2022, there were over 1,400 inquiries to Rare Concierge Patient Services, which provided personalized information, resources, and support to patients and caregivers from 197 different disease groups in 44 states and 39 countries. In addition, the Global Advocacy Alliance will continue to provide support to patient advocacy groups seeking guidance on building sustainable communities, fundraising, expanding their reach, providing resources and support for patients and families, and learning about opportunities to advance clinical care and research for their disease. The Global Advocacy Alliance has over 450 rare disease member organizations across 31 countries.
Global Genes has a rich history of providing education and information through its toolkits, events, webinars, podcasts, and videos. The organization continues to invest in these educational resources for the patient community.
The RARE-X Data Collection Program anchors the organization’s push to support research and development efforts. The program enables rare patient communities to collect robust, secure, patient-reported data that is patient-owned. Communities are leveraging RARE-X’s novel governance and technology infrastructure, which supports patients and advocacy groups in making that data widely available for research. Today, 57 rare disease communities represented by over 82 patient advocacy organizations are leveraging the RARE-X data collection and sharing platform. In addition, the newly published RARE Disease Research Roadmap provides a comprehensive resource to advocates who want to drive research and work effectively with researchers and industry partners.
To help patients better address mental health issues, Global Genes is working to connect people with the most appropriate resources faster. The organization also recently announced a grant program for the Global Advocacy Alliance members to allow patient advocacy groups to develop mental health resources.
To support diversity in research, Global Genes is launching two pilot programs with partners in the Kansas City and Alabama regions. These pilot programs are being developed with scale in mind. Meeting patients where they are and through rare disease education, patient identification, and support within diverse communities, the goal is to create access and trusted health networks for underserved patients and families. In addition, Global Genes will again be offering Health Equity grants to its Global Advocacy Alliance members to develop initiatives to improve outreach strategies and address challenges affecting underserved and underrepresented communities.
And to help patient organizations improve the diagnosis and treatment of diseases, Global Genes is piloting a research readiness framework that will be available in 2023. This will help patient advocates catalyze early work and research to entice interest from and build an ecosystem with research partners, including biopharmaceutical companies.
The organization also announced that it would bring together its RARE Health Equity Forum, RARE Advocacy Summit, and a RARE Partnering and Investor Forum into a week-long series of events in San Diego in September 2023.
“We appreciate the sacrifices advocates and organizations make to attend multiple meetings. By bookending the RARE Advocacy Summit with these two additional programs, we will create travel and time efficiencies and reduce the burden for attendees,” said Son Rigby. “Combining these events in a single time and place will create an unparalleled opportunity for support, education, and networking as we bring together people from across the rare disease ecosystem to drive progress.”
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 visit the Resource Hub.
RARE-X is a program of Global Genes focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X gathers structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology. Through RARE-X, Global Genes is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.