The E.WE Foundation is committed to ensuring families with rare diseases, medical complexities, and special health needs have equitable access to quality healthcare, early intervention, and social services. We acknowledge the disparities surrounding ethnicity, race, gender, age, socioeconomic status, education, religion, geography, gender identity, legal status, and physical abilities. Patients with rare diseases like Edwards Syndrome or Trisomy 18 should have immediate access to medical resources and economic support without bias or prejudice.
We recognize the contributions and perspectives that each of us can make, and we call on organizations, affiliated partners, and individuals to prioritize and hold ourselves accountable in being vigilant in including, building, and supporting an inclusive community that upholds a culture of diversity, inclusion, and champions for equitable patient care.
We are committed to doing our part for the more than 30 million patients living with rare diseases in the United States and over 400 million worldwide. We stand in solidarity with patient communities and organizations striving to improve and advance how patients interpret, understand, and receive healthcare services, treatments, and information. We are committed to transforming healthcare solutions and positively influencing the medical perspective through advocacy, education, and public policy. We commit to dismantling the narrative of exclusion by empowering the patient’s voice to ensure all individuals receive equitable access to healthcare and community resources.
We are committed to recruiting individuals from diverse backgrounds and partnering and supporting community stakeholders who share our commitment to inclusivity. We are committed to creating an organizational culture that respects differences and similarities and reflects our stance on championing diverse representation, equitable access, and inclusion for all.
HEALTH EQUITY COMMUNITY WORKSHOP
The E.WE Foundation believes all families should have equitable access to quality healthcare, community resources, and support services. We acknowledge the disparities surrounding ethnicity, race, gender, age, socioeconomic status, education, religion, geography, gender identity, legal status, and physical abilities within our communities. The Health Equity Community Workshop will bring together community stakeholders to identify collaboration opportunities to address inequities in patient care, focusing on rare diseases and reducing disparities, discrimination, and biases felt by patient communities. Through plenary sessions, networking, and interactive workshops, this event empowers attendees to advocate for more inclusion and provides strategic insights and tools to support underrepresented patient communities.
HEALTH EQUITY IN ACTION
E.WE Foundation CEO & President Sarita Edwards joined Global Genes and the Rare Disease Diversity Coalition for the 2022 RARE Health Equity Summit in Atlanta, GA. The RARE Health Equity Summit brings together stakeholders in the rare disease community to identify the challenges that disproportionately affect underrepresented populations and define collaborative efforts to address those inequities.
COMMUNITY CONVERSATIONS
Check out our exclusive Being Rare & Black podcast episode! A raw conversation about race, health, and stigma! We’re talking about navigating rare diagnosis, as patients and caregivers, while black. .Joining this conversation is Stacey Brown from Wombless and Worthy, Georgene’ (Gina) Glass from DreamSickle Kids Foundation, and Dionne Stalling from Rare & Black.
The E.WE Foundation 