Diversity, Equity, and Inclusion (DEI)

Diversity, Equity, and Inclusion (DEI)

At the Foundation, we acknowledge the harmful impact of disparities on the communities we serve. By building the core values of diversity, equity, and inclusion (DEI) into our operations, we seek to dismantle inequalities and intentionally make space to center DEI in the work that we do so that we may better serve our patient community.  

Not only are the conditions rare, but the patients we represent are diverse due to socially attributed factors such as race, ethnicity, gender, or geographical location, as well as their experiences and ability levels. For this reason, the Foundation is committed to improving upon our efforts to be a diverse, equitable, and inclusive organization. With patients in countries around the world experiencing various symptoms, accessing different types of health care, and facing a variety of barriers because of their condition and/or social conditions, we are placing inclusivity at the center of our mission. We are beginning a much-needed conversation and will continuously revise our DEI strategy as we adapt our programs and services to reflect the needs of all patients and care partners within our community. 

The following are ways that we are working to integrate DEI into each of our four mission pillars:  

Pillar 1: Support

Pillar 2: Education

Pillar 3: Research

Pillar 4: Advocacy