A Look Back and a Look Ahead for EB Families

 

The new year will be upon us in just days. As we get ready to venture into 2018 uncertain of what the year may hold, we do know this: there are some exciting things ahead so let’s toast to the best of this year and what is yet to come.

 

In 2017, we saw a rise in the number of clinical trials in the U.S. and around the world focused on epidermolysis bullosa. As of December 2017, 20 trials are currently recruiting or launching though not yet recruiting, a strong indication that the research community dedicated to EB and other rare diseases is growing and becoming more vested in developing better treatments and a cure.

 

Various organizations that support EB patients and their families have continued their efforts to garner more media attention about the disease as well as research and resource dollars. Stories covered across major media outlets over the past year such as the Washington Post, New York Times, Forbes and Rolling Stone are reaching a wider audience and shedding light on a little-known disease. For The EB Research Partnership (EBRP), 2017 has meant record-setting fundraising dedicated to EB research including $1.3 million at its annual fall gala Action for Jackson and $135,000 at its annual poker night All in for a Cure, both held in NYC.

 

Groups also are making new strategic alliances to share valuable knowledge and data and encourage collaboration among clinical communities. Debra of America recently announced its new partnership with Jefferson Dermatology at Thomas Jefferson University (Philadelphia, PA) to establish the first ever Adult-only EB and Skin Cancer Clinic.

 

Next year, EB families can look forward to. Debra of America hosts its debra Care Conference July 22-25, 2018 at the Grand Sheraton at Wild Horse Pass in Chandler, Arizona. Held every two years, the event brings together EB patients and their families from across the country to meet with medical professionals, researchers and other resources to support EB families. As organizations like debra, EBRP, Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the public figures that support them, garner greater media interest and fundraiser support for their campaigns and events, new resources and knowledge can become more readily available to EB patients and the people who care for them. It is very exciting to see what may be in store for all of us living and working within the EB community.

 

For now, we wish you all a beautiful holiday season, and will look forward to connecting again in the new year. Be safe out there, everyone.