What’s Next for the EB Community?

As we begin a new year, it is exciting to anticipate what lies ahead. Each 365 days we get a few steps closer… closer to educating more people about the skin disorder; closer to reaching more recently diagnosed patients and their families to get tools and information into their hands that they may need; and closer to connecting more clinical researchers to develop better treatments or even a cure in the future. EB awareness has been a core mission for us here at the EB Resource blog since the beginning, and that has not changed. It is just one goal amid many and some very specific missions at other EB-focused organizations, such as DebRA, the EB Research Partnership, EBMRF and other dedicated groups.

Every year, our community grows. New families are touched by the disease, and often their family and close friends join our circle and demonstrate a willingness to learn and share their new knowledge with others. And as that circle expands, we have a greater opportunity to communicate more broadly than we did before and inspire others to ask themselves questions, such as: how can I use my sphere of influence to get the word out about this disease? What talents or skills do I have that could possibly lend themselves to support EB families or campaigns to assist them? And are there specific actions I can take in terms of events, campaigns or community/political involvement that may make a difference for EB resource fundraising, research progress or other tools to support the cause?

Each year, the medical community re-examines current clinical trials underway and frequently launches additional research to test new treatments by working closely with EB patients and their families. What new trials might 2015 include? It is too early for us to share here, but, as always, you can expect we will be keeping our eyes and ears focused on the latest news of these clinical trials and sharing with you what we learn.

A new year is a wonderful time to look back and assess, as well as look ahead and target those things we want to do. So we suggest at this ideal time, the start of a fresh new year to ask yourself the question, 'what is next for the EB community?' Because that will also be very much up to you to decide. And we look forward to a new year of educating others about EB with you.

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