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Local Patient Advocate Organizes Seminar and Brings Awareness to a Rare Disease

July 15, 2019

By Marion During

Toy zebra with heart "balloon"Starting grass roots efforts to improve support and advance the treatment for patients with a rare disease can be extremely challenging. It requires passionate patient advocates with persistent determination. It is also critical to have the support of medical institutions and other advocacy organizations. One patient advocate in Kansas City is pulling together all the pieces to make specialized, local care for the rare disease Ehlers-Danlos syndrome (EDS) a reality.

In 2016 Wendy Cogan finally received the diagnosis explaining some of her life-long health issues that were becoming more progressive: hypermobile Ehlers-Danlos syndrome. Since then, Cogan has become a powerful voice for the EDS community in Kansas City. She established the nonprofit corporation EDSKC Collaboration Inc., which supports educational initiatives, advocacy, research, community-building and care for the Kansas City EDS community.

Cogan is partnering with two doctors at Children's Mercy Kansas City - Eric T. Rush, MD, FAAP, FACMG, a pediatric geneticist, and Jordan T. Jones, DO, MS, a pediatric rheumatologist - to organize the Ehlers-Danlos Syndromes and Associated Conditions Awareness and Education Seminar on September 7, 2019. This one-day seminar, which will be held at the University of Missouri-Kansas City's Volker campus, is an opportunity for the Kansas City medical community to learn about EDS from local and national specialists.

"My future goal is to start fostering collaborations so that local specialists in Kansas City can learn more about EDS and can work together to address the complex, multi-systemic challenges patients with EDS face," Cogan said. "I think our upcoming seminar will be a good first step and I am excited to see Kansas City become a leader in EDS care and research."

Three years ago, Cogan did not know anything about patient advocacy or Ehlers-Danlos syndrome. After a 25-year career as an executive at Sprint Corporation, Cogan retired in 2015 to take care of her mother as she underwent treatment for metastatic breast cancer. When her mother died a year later, Cogan joined Patient and Investigator Voices Organizing Together (PIVOT), a patient advocacy group at the University of Kansas Cancer Center dedicated to redefining cancer researcher. It was there that she learned about patient advocacy.
Once Wendy was diagnosed with EDS, she connected with Kelly Ranallo, founder of RareKC, who then introduced her to Richard J. Barohn, MD, Vice Chancellor for Research at the University of Kansas Medical Center and Director of Frontiers: University of Kansas Clinical and Translational Science Institute.

"Dr. Barohn took the time to listen to my concerns about the lack of local care for patients with EDS," Cogan said.
Barohn, whose current research focuses on rare neurological diseases, introduced Cogan to Matthias Salathe, MD, Chair of the KUMC Department of Internal Medicine.

"Dr. Salathe really helped me think of the collaborative seminar idea," Cogan said. "He has been so supportive and encouraged me to reach out to national EDS experts to foster future mentoring relationships."

Although Cogan started the conversation and has been a powerful driving force for EDS care in Kansas City, she does not take all the credit for organizing the upcoming conference.

"This a true collaborative effort with both local and national support," Cogan said. "We have received generous sponsorship from Children's Mercy Kansas City, the University of Kansas Medical Center and two local families. I also received mentorship from Denver-based advocates who assisted with a similar conference there last year, and Dr. Ellen Elias, a clinical geneticist from Children's Hospital Colorado, is coming to speak at our seminar as well."

To learn more and register for the Ehlers-Danlos Syndromes and Associated Conditions Awareness and Education Seminar visit the event website or contact EDSKC Collaboration Inc. at Children's Mercy Hospital designates this live educational activity for a maximum of 7.5 AMA PRA Category 1 Credit(s)TM. A general certificate of attendance will be given to all other healthcare providers.

About Ehlers-Danlos syndrome

Ehlers-Danlos syndrome is a group of connective tissue disorders that vary in their genetic cause and expression. Patients often present with varying degrees of complex symptoms, ranging from mildly loose joints to life-threatening complications.

According the U.S. National Library of Medicine, the combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. Early diagnosis and treatment is critical for increased quality of life and reduced medical and emotional impacts.

About Frontiers

Frontiers: University of Kansas Clinical and Translational Science Institute (KU CTSI) is part of a nationwide network of CTSI institutions working to speed the research process from scientific discovery to patient care. Frontiers supports the spectrum of translational research, from animal health studies to community-based and population health outcomes research. Frontiers recognizes that diverse teams are essential to improve health, and of utmost importance are the partnerships and collaborations with communities, families and individuals. Frontiers is supported by a five-year, $25 million grant from the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH).

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Last modified: Jul 18, 2019