( BPRW) WNBA All-Star and Champion Diamond DeShields Joins Others as the Rare Disease Diversity Coalition Celebrates 5 Years of Bold Action and Advocacy ( Black PR Wire ) WASHINGTON, D.C.— The Rare Disease Diversity Coalition ( RDDC ) is proud to mark 5 years of bold, community-driven work to transform how rare diseases are diagnosed, treated, and understood for historically underserved populations. Founded as a plea for action, RDDC has grown into a national coalition of over 100 partner agencies who are united in their desire to reduce differences in unique disorder treatment. The Coalition continues to advocate for a medical technique that is equitable for everyone, from improving research and policy to increasing patient and caregiver voices. RDDC officials and community activists gathered recently to discuss the human stories behind the data, which highlight both the need for change and the urgency of the situation. Diamond DeShields, WNBA Champion and advocate for rare diseases, was one of them. She shared her journey living with drawn, a degenerative eye condition that had discreetly affected her athletic job for years before it was diagnosed. DeShields recalled that” I’d seen so many physicians up until this point.” Her long-term pleasure only came after reaching the highest levels of professional sport, underscoring the devastation of delayed detection. Dr. Rutvi Doshi, the team physician who finally treated her condition, said” Diamond wasn’t held back by function ethics or skill.” She was resisted by a program that didn’t recognize her state quick plenty. The opposite happens when consciousness and exposure are not met.” Alternate speakers shared powerful testimony. Sarah Jones, a person who has EGPA, described the mental, physical, and financial strain of seeing more than 57 specialists in a year before getting a true diagnosis. Multiple myeloma person Okya Gilbert shared that it was a regular life insurance exam, not his healthcare provider, that revealed his condition. These are not omissions, they are. These are habits, according to Jennifer Waldrop, Executive Director of RDDC. The foundation of RDDC’s strategy is a data-driven strategy for transforming treatment shipping, research inclusion, and open awareness.” Our systems are failing too many people, very frequently,” says RDDC. Over the past five decades, RDDC has: increased individual and group accents through national campaigns.
worked with policymakers and experts to alter systems
created a different alliance of partners promoting change.
created tools and equipment to promote advocacy at all levels
Looking back, RDDC will continue to have a simple but meaningful vision: making sure no one is overlooked, disregarded, or delayed when dealing with a rare disease. We are fighting for a potential where people are first believed. where diagnosis arrives faster. No one is left behind, Waldrop said. Visit www. RDDC.org for more information on its fifth anniversary and its efforts to promote health equity in unique disease attention. Rare disease diversity com. About the Rare Disease Diversity Coalition ( RDDC ): Black Women’s Health Imperative founded the RDDC to address the extraordinary challenges faced by underserved populations with rare diseases. The Coalition brings together industry leaders, health and diversity advocates, and experts on rare diseases to determine and support evidence-based solutions to reduce the overwhelming burden of exceptional diseases on previously underrepresented populations. Visit rarediseasediversity for more information. nonprofit. About the Black Women’s Health Imperative ( BWHI ) BWHI is a national non-profit organization that invests in the best methods and organizations to accomplish its objectives. It is aimed at identifying the most pressing health issues that affect the country’s 22 million Black women and girls. More details about BWHI can be found at bwhi. nonprofit.
(BPRW) WNBA All-Star and Champion Diamond DeShields Joins Others as the Rare Disease Diversity Coalition Marks 5 Years of Bold Action and Advocacy
