Sickle Cell Disease Association of America

Our Mission   

To advocate for and enhance our membership's ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.

What We Do

Support for over 42 community-based member organizations in 18 states with program and services, materials, technical assistance and educational trainings to carry out the mission.   Chapters provide services to those who have sickle cell disease from support groups to financial assistance.

Get Connected©, a patient powered registry enables those with sickle cell disease to take charge of their health care and allows SCDAA to gather vital statistical information to assist in the future of treatments and research.  This is the only patient registry for individuals with sickle cell disease.

National Convention on Sickle Cell Disease brings together individuals who have sickle cell, their families, caregivers and professionals from around the country to educate and communicate critical topics in the area of sickle cell disease.  More than 10,000 people have participated in the annual convention from 34 countries during the past for 44 years. 

Advocacy efforts included petitioning the White House to garner attention to sickle cell disease and to demand increased funding to lobbying congress, our Senators and representatives to support better treatments, supportive services and care for patients who live with sickle cell disease.   Our legislative briefing brings together staff from across the country to train on national priorities and initiatives that effect the population we serve. 

Walk with the Stars is the only national fundraising event for SCDAA which supplies vital funds for resources and programs year round, mobilizing individuals and corporations to raise awareness.