FIU Student Creates Website for Rare Disease Advocacy

Alexa Velez / Contributing Writer

For patients with rare diseases, a timely diagnosis is often a matter of life or death. Misdiagnoses often hinder the proper treatment these patients need. 

Danielle Haller, a senior at FIU and writer for PantherNOW, found new passions through her frustrations as a person with a disability and wanted to create a positive change within the disabled community. 

To do that, she founded the Zebra Care Initiative, also known as ZCI, a student-led volunteer organization that aims to educate the public and healthcare professionals about the signs and symptoms of chronic disease and correctly diagnose rare diseases.

Haller, majoring in Sustainability and the Environment, was diagnosed with a rare disease during her first two weeks at FIU.

It took doctors 15 years to correctly diagnose a connective tissue disease called Ehlers-Danlos syndrome – a group of inherited disorders that affect the skin, joints and blood vessels. 

“I was in the process of this diagnostic odyssey for such a long time,” said Haller. “I have problems throughout my whole body from my gut, kidneys, heart, immune and nervous system.” 

Haller explains the name as “zebra, because no two stripes are the same and people who have rare diseases, or just medical complexities in general, are not going to have the exact same experience, and therefore, we need to be viewed independently. One size fits all will not work for us.”

The CARE acronym stands for Charity, Access, Research and Education. She plans to eventually turn it into a nonprofit, though at the moment it is a student and volunteer organization led by everybody from patients to activists to health care providers. 

On the ZCI website, there are many tools and resources. They have a list of disability scholarships, groups, rights, and mental health support in Florida. There is also a list of doctors in Florida who treat rare diseases. 

ZCI is working with organizations like the Maurice A. Ferré Institute for Civic Leadership and the Office of Social Justice and Inclusion to launch educational and interactive discussions on accessibility, disability, and intersectionality to make FIU a more inclusive campus.

Dr. Agatha Carballo serves as the Founding Director of the Ferré Institute, which was launched in May 2021. After Carballo’s Civics 101 workshop at the FIU Student Leadership Summit in February 2022, Haller reached out to her. 

Carballo has been supporting Zebra Care and Haller as her mentor and has helped her connect to opportunities to present her research and the organization’s advocacy work at national and international conferences.

“One of the main objectives of the Ferré Institute is to support students in terms of civic leadership and service through coaching, professional development, mentoring, and networking opportunities,” said Dr. Carballo. “Zebra Care is dedicated to increasing accessibility, disability awareness, and education and we are happy to support the efforts of our students to create a better society for all.”

According to the medical journal Genome Medicine, “rare diseases affect 30 million people in the USA and more than 300–400 million worldwide.” 

About 7,000 of these rare diseases fall under the “unknown” undiagnosed category in the medical world. One in 10 people in the United States are silently suffering from a condition doctors can’t properly diagnose.

Samantha Jade Duran, 24, a student at University of Miami, is an activist for disability rights and a member of the disabled community. After 18 years, she was finally diagnosed with a rare disease called Maffucci Syndrome, a disorder that causes benign tumors in her veins and overgrowths of cartilage in her bones. 

It primarily affects her hands and feet. According to the National Institute of Health, less than 200 people worldwide have been diagnosed with Maffucci since 1881.

“Besides my orthopedic oncologist, none but one of my doctors knew about Maffucci syndrome,” said Duran. “It’s extremely unsettling when you know more about your conditions than your doctors and they look it up in front of you. I have a plethora of unexplained, debilitating symptoms and every single one of my doctors have told me they don’t know why, as well as that there’s nothing they can do. They’ve kinda just given up on me because, again, the lack of research contributes to that.” 

Because of situations like Duran’s, ZCI was made in an effort to spread awareness of rare diseases to the community.

If students are looking to get volunteer hours, they could apply to become a part of the ZCI team.

“At Zebra Care we believe in building competence in our education system, to equip medical professionals with the right tools that will help them recognize early signs of chronic disease,” said Haller. “And to achieve proper diagnosis of rare diseases, and to build a community for students who are trying to balance living with a rare disease and/or disability.”

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