Standing Up for Rare Disease Patients: Our 4-Year Journey
When Genesis Jones stepped up to the podium and read a heartfelt poem about living with sickle cell disease, describing the betrayal by her own body and the healthcare system, there wasn’t a dry eye at our Annual Rare Disease Day Reception and 1st Annual RISE Awards. Moments like these are powerful reminders of why, this week four years ago, our President, Linda Goler Blount, had the foresight to envision the Rare Disease Diversity Coalition.
This week, Genesis took to social media from her hospital bed, chronicling her journey and demonstrating why she was awarded our Patient RISE Award. As a rare disease patient of color, Genesis is one of the fortunate ones with a care team that advocates on her behalf. Unfortunately, this is not the case for many others. Many rare disease patients of color face years of misdiagnosis and disbelief when they talk about their pain, often struggling to get the care they need.
Take Mason’s story, for example. In 2010, Deavin Arnold-Hadley and Chris Hadley welcomed their son, Mason. Initially hitting all his milestones, things took a drastic turn in 2012, leading to countless hospital visits and a relentless pursuit for a diagnosis. Mason was eventually diagnosed with Doose Syndrome, a rare form of epilepsy. The treatment options presented had negative effects on Mason, prompting Deavin to introduce a medical ketogenic diet, which showed immediate positive results. Despite the challenges, including sleepless nights filled with anxiety, the Hadley family’s faith and unconditional love for Mason gave them the strength to push through. They continue to advocate for others, emphasizing the power of faith, community, and the importance of empowerment and advocacy.
The RDDC is dedicated to addressing the plight of rare disease patients like Mason everyday. These efforts are made possible through a network of partners including rare disease experts, patients, healthcare professionals, diversity advocates, and industry leaders. The RDDC working groups are the cornerstone of the work and are focused on 3 key areas: diversity in research and clinical trials, government regulation and policy and the patient, provider, and caregiver journey.
In the 4 years since its inception, the RDDC has collaborated on impactful content such as in-person conversations with advocates, clinical trial education videos and powerful webinars. It has co-sponsored the annual Rare Health Equity Summit and produced groundbreaking surveys. Coinciding with Rare Disease Day, RDDC hosts an annual event in Washington, DC, to raise awareness and support for individuals with rare diseases. You can download our interactive PDF to access past events and additional content HERE.
“As we celebrate four years of the Rare Disease Diversity Coalition, we are reminded of the significant strides we’ve made in raising awareness and advocating for equitable care for those impacted by rare diseases. Our commitment to centering diversity and equity in every aspect of our work is unwavering. Together, we are breaking down barriers and creating a future where every patient, regardless of their background, receives the standard of care and support they deserve.”
— Jenifer Waldrop, Executive Director, RDDC
Join us in supporting the RDDC’s valuable work and mission. Learn more at rarediseasediversity.org.