MetroHealth to Host Rare Disease Day Cleveland

The MetroHealth System in Cleveland will host Rare Disease Day Cleveland on February 29, the rarest date on the calendar, to raise awareness and advocate for change that will pave the way for new treatments and improve the quality of life for people with rare diseases.

“As someone whose mother passed away from a rare form of Leukemia, I am deeply passionate about raising awareness about rare diseases and advocating for the communities they impact,” said MetroHealth President & CEO Airica Steed, Ed.D, RN, MBA, FACHE. “We are privileged to partner with Ohio Rare Action Network for what promises to be an inspirational and informative day. At MetroHealth, we are committed to advancing health equity, and shining a light on rare diseases is an important component of that work. I look forward to deepening our engagement with policymakers, community organizations as well as patients and their families on this important initiative.”

MetroHealth, Case Western Reserve University, Harrington Discovery Institute at University Hospitals and Cleveland Clinic are collaborating for the event, which will focus on health and social equity for patients, their caregivers and families. The event will take place from 8 a.m. to 1 p.m. at the MetroHealth Rammelkamp Center for Education and Research. CLICK HERE for additional details.

“It is crucial for hospitals and policymakers to come together and collaborate with patient support groups in order to ensure that these patients have access to the care and resources they need,” said MetroHealth Vice President and Chief Health Equity Officer Charles Modlin, MD, MBA. “By hosting the Rare Disease Day conference and actively and collaboratively working toward health equity, MetroHealth aims to create an inclusive and culturally sensitive environment that prioritizes the needs of individuals with rare diseases. Together with patient support groups, researchers and policy makers, we can ensure that these patients receive the care and resources they deserve.”

There are more than 7,000 identified rare diseases, classified as occurring in fewer than one in 200,000 births. In the United States, rare diseases affect approximately 35 million people, more than half of whom are children. Unfortunately, 30% of those children will not live to see their tenth birthday. It’s estimated that 95 percent of rare diseases have no FDA-approved treatment options.

“By definition, each rare disease affects only a few, that is why we have to bring all of our voices together into one in order to be heard by the legislature, by the pharmaceutical and insurance companies and by the doctors, said Pam Judge, of Ohio Rare Action Network, an affiliate of the National Organization of Rare Disorders (NORD). Judge’s son, Connor Judge, has a diagnosis of NMO, a rare autoimmune disease that affects fewer than four people for every 100,000. “We do that through efforts like Rare Disease Day in Cleveland.”

Presentations will address the challenges surrounding the diagnosis and treatment of rare diseases and the need for more approved treatment options. The program will highlight advocacy and legislative efforts, and a panel of speakers will present the patient perspective. A networking reception will follow from 12 to 1 p.m. The program will be streamed for those who wish to attend remotely.