CLEVELAND — Feb. 29 is the rarest day on the calendar, and some hospitals are taking the opportunity to vouch for people who deal with rare diseases.

And while that word ‘rare’ might lead one to believe that there aren’t many who fall into that category, the Rare Action Network said rare diseases actually affect more than 300 million people worldwide.

Tracy Marie Greenberg has a rare disease: Morquio A Syndrome. 

“So I’m missing an enzyme that is needed to clean out waste products from cells, and so it builds up the wastes products in the cells, and I’m on enzyme therapy once a week to clean out those waste products,” she said.

Greenberg said despite experiencing symptoms her whole life, it took decades before she was diagnosed, which is why she advocates for those with rare diseases. 

“So I want to help other people understand you know, that they can advocate for themselves and find out what’s going on and get to a bottom of it as a partner with their doctors,” Greenberg said.

For Dr. Airica Steed, CEO and president of MetroHealth Cleveland, rare disease has impacted her family personally. Her mother suffered from a rare form of leukemia. 

“We need to make rare diseases unrare to promote the continued development of funds, to advocate for quicker discovery, quicker detection, leading to fewer mistakes and misdiagnoses,” Steed said.

And that’s the goal of Rare Disease Day. It’s an event in Cleveland that brings together experts from Case Western Reserve, Cleveland Clinic and University Hospitals.

All of them are advocating for new treatments to improve the quality of life for those living with rare diseases. Jeff Kodman is a patient with microscopic polyangiitis who also is a caregiver for his son with Kawasaki Disease, an autoimmune disease. 

“It’s rare, everything’s different, you just end up taking every day as a blessed day that yes, here’s another day,” Kodman said.

Kodman said today is a way for him to take his experience and help others. 

“What I try to do is be able to talk to other people who end up with similar situations so when they say, ‘oh I’ve had this happen, this happen’ and if you can say, ‘you know what, I’ve had that happen too’ so it makes their unusual occurrence somewhat familiar to somebody else which helps them out,” Kodman said.

And to someone who might be struggling to figure out their medical diagnosis, Greenberg has some advice. 

“Don’t give up, because I didn’t give up, and I am now getting a treatment that is really helping me, and when I got my diagnosis I cried with happiness, which everybody was confused about, ‘like why are you so happy?’” Greenberg said. “And I was like because I know what I’m dealing with now, right.”