Global Genes is a globally connected community equipped to eliminate the challenges of rare diseases by providing patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as its central core.

 GANSID brings together advocates of inherited blood disorders to work together to advance care, treatment, research, capacity building and education in regions of the world facing challenges and underdeveloped healthcare systems, poverty, and a lack of disease awareness among patients.

 NORD works across 300 diseases to improve the health and well-being of 30 million Americans living with rare diseases and their families by driving advances in care, research and policy.

RAIN is a global, community-based organisation focused on all rare and ultra-rare anaemias. It is guided by a Steering Committee of patients and patient advocates, a Scientific Advisory Board of world-leading experts in rare anaemias, and a Member Network, all of whom provide support, information, and resources on different rare anaemias.