Global Genes and Rare-X

RARE Concierge, Global Genes’ patient services arm, is 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. https://globalgenes.org/connect/rare-disease-patient-services/ 

Global Advocacy Alliance provides 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. https://globalgenes.org/about-us/global-advocacy-alliance/ 

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. https://rare-x.org/