The Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID)
The Gap
Whether operating in a low, medium, or high-resource environment, most advocates and organizations supporting individuals and families affected by inherited blood disorders are typically motivated by a personal connection to the disease. This ensures a passionate commitment, but may not provide access to the opportunities or resources needed for effective advocacy. With cross-disease collaboration, Inherited Blood Disorders serving organizations would be able to work together to reach and effectively advocate for more patients, especially those living in low and medium-resource countries.
The Opportunity
The Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) was established to identify common purposes among inherited blood disorders and encourage disease-specific and cross-disease advocacy initiatives to meet the needs of people living with inherited blood disorders, no matter where they live in the world.
The GANSID brings the voices of inherited blood disorders together to advance care, treatment, research, capacity building, and education in regions of the world facing acute challenges due to underdeveloped healthcare systems, poverty, and a lack of disease awareness among patient populations. It unites the forces of organizations and clinicians serving inherited blood disorders to better amplify their impact globally.
To shape and advance efforts that ensure the promise of new inherited blood disorders innovation can be fully realized for all patients, the Global Action Network for Sickle Cell & Other Inherited Blood Disorders is strengthening the advocacy skill sets of the patient organizations and clinicians serving the inherited blood disorders communities through training, mentorship, and cross-disease collaborations.
Who We Are
A global network of patient organizations, health care providers, health organizations, researchers, professional and academic societies, and industry partners that serve people impacted by sickle cell disease (SCD) and other inherited blood disorders.
Our History
GANSID is a nonprofit organization incorporated and headquartered in Dover, Delaware. It was founded as the Sickle Cell Disease International Mentorship Association (SCDIMA) on January 18, 2022. Shortly after registering the entity, the interim board realized that the objectives of this initiative could also support other inherited blood disorders and therefore changed its name on June 1, 2022 to the “Inherited Blood Disorders International Network (IBDIN)”; and finally on September 12, 2022, to the Global Action Network for Sickle Cell Disease and Other Inherited Blood Disorders (GANSID).
Furthermore, the GANSID was also registered in Toronto, Canada, on June 30, 2023, and became a charity with 501 (C) 3 status in the USA on November 16, 2023.
FOUNDERS
GANSID was envisioned and established by Mrs. Lanre Tunji-Ajayi, M.S.M. Other founding members are Dr. Adlette Inati, Mr. Riyad Elbard, Dr. Marimilia Pita, and Dr. Eydith Ortiz.