Global Genes is a 501(c)(3) nonprofit organization that connects, empowers and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere. We provide hope for the more than 350 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, and stand up, stand out and become effective advocates on their own behalf. If you or someone you love have a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at Globalgenes.org.
The National Organization for Rare Disorders
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
The Global Alliance for Genomics and Health (Global Alliance)
The Global Alliance for Genomics and Health (Global Alliance) is an international coalition, dedicated to improving human health by maximizing the potential of genomic medicine through effective and responsible data sharing. The promise of genomic data to revolutionize biology and medicine depends critically on our ability to make comparisons across millions of human genome sequences, but this requires coordination across organizations, methods, diseases, and even countries. The members of the Global Alliance for Genomics and Health are working together to create interoperable approaches and catalyze initiatives that will help unlock the great potential of genomic data.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 869 rare disease patient organisations from 71 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
Rare Diseases International
RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.
RDI is an international network currently embedded in EURORDIS, which supports the development of RDI. It is governed by a Council, elected by RDI members in April 2016. In coming years the Council and members of RDI will decide if and when to register RDI as a separate organisation with its own legal identity. The initial focus is on taking action and gaining experience of working together.
Rare Genomic Institute
RGI is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RGI helps families pursue personalized research projects for diseases not otherwise studied.
RGI bring together scientists who share our passion for helping patients with rare diseases and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.
ABLE will be happy to lend any support that is needed for the growth of ORDI. On behalf of ABLE and my Executive Committee, I would like to wish you and your dedicated team the very best with respect to the tireless efforts in building ORDI and bringing it to this stage today.
– Dr. P.M.Murali- President ABLE