Diversity, Equity and Inclusion

Given the rareness of H-ABC, the Foundation recognizes the challenges for those who may be marginalized due to a rare disease, or do not have the resources to get the care they need and deserve.  Inequities have existed within the system that create major challenges to address basic clinical and research focus, and diagnosis.   Add a patient’s orientation, preference,  ethnicity, even socio economic background, all  of which are material factors in better understanding a disease and its impact, further exacerbate alienation and isolation.

The Foundation to Fight H-ABC is focused on doing their share to help overcome these obstacles and identifying as many people living with H-ABC as possible with the hope of promoting understanding and acceptance.   This entails the following:

• Researching the cultural sensitivities of the under served and under represented patient community;

• Educating the patient community about H-ABC by developing, updating and distributing resource materials to include information on diagnostic testing, emphasizing the importance of participation in clinical trials and research, and providing access to doctors who treat the condition; and

• Reaching out to patients to widen disease demographics to be more inclusive, via workshops, social media and other media networking.