Debra’s Family-oriented EB Care Conference Kicks Off Sunday in Arizona

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by Larry Luxner |

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Debra Care Conference

The 2018 Debra Care Conference — a U.S. gathering of epidermolysis bullosa (EB) patients, families, disease advocates, and experts — gets underway this Sunday in suburban Phoenix.

The biennial event, organized by the Dystrophic Epidermolysis Bullosa Research Association of America (Debra), takes place July 22-25 at the Sheraton Grand at Wild Horse Pass in Chandler, Arizona.

A larger, annual meeting, the 2018 Debra International Congress, is scheduled for Sept. 7-9, at the Grand Hotel Zermatterhof in Switzerland. This event brings together delegates from national Debra groups, scientists, physicians, EB patients, and industry representatives.

Brett Kopelan, the group’s executive director, said 620 people will attend the family-oriented Arizona gathering, including 540 people with EB.

“This is an opportune time for patients and caregivers to hear from academic researchers and those in private industry who are doing basic science and developing treatments for EB,” Kopelan said to Epidermolysis Bullosa News in a phone interview from Debra’s New York headquarters.

“They’ll also get to hear from clinicians who have developed specialties within EB, such as ophthalmologists and dentists. It’s very rare to be able to meet with such people directly,” he added.

A number of social activities for children and their families are planned, spaced among presentations dealing with such personal care issues as diet and nutrition, eye health, gastrointestinal problems, physical and occupational therapy, dental needs, and the challenges of coping with a chronic disease and with managing EB care.

Specialists will also address treatments — both available and potential — with more scientific sessions planned on gene therapies, cell therapies, research into symptom relief and pain management, treating hand contractures, and transitioning to adult care.

Discussions will also cover the importance to patients of knowing their disease-causing mutations, and how to better understand the various types of clinical trials ongoing or planned in EB.

For those who can’t make it to Arizona, half a dozen conference sessions will be livestreamed via Debra’s Facebook page, including a talk by U.S. Department of Justice attorney David Knight on “Protections Under the Americans With Disabilities Act.” (Registration is closed for the event.)

In 2013, the Justice Department ruled that the Golden Corral restaurant in Westland, Michigan, had to pay $50,000 in damages to Danielle Duford — and $10,000 in civil penalties — after the restaurant’s manager forced Duford and her four daughters, who have EB, to leave the premises.

Also being livestreamed is a talk on gene therapy by M. Peter Marinkovich, MD, director of the Blistering Disease Clinic at Stanford University School of Medicine.

“This year, we’re really going to drill down on gene therapy and the importance of understanding your genetic diagnosis, how to read it and what it really means,” said Kopelan, estimating that 25,000 Americans — and about half a million people worldwide — have EB.

Pittsburgh-based Krystal Biotech will use the conference to present an update on its lead product candidate, KB103, a topically applied gene therapy being developed to treat EB, the company said in a press release.

The global Debra conference in Switzerland is also fully booked, but those still interested in attending can post to a waiting list.