Your Voice in the Community


How vocal are you about epidermolysis bullosa? It’s possible you may be reading this and not be personally impacted by EB. Perhaps a friend or a family member may be directly affected and you feel compelled to find a way to do more to be helpful.


One of the most truly valuable ways that you can show support for EB patients and their families is to become an advocate for them. Use your own voice and roles to educate others about EB in the workplace, in local schools and in the community. You do not need to be personally impacted to make a difference and make your voice heard.


So how can you do this? For starters, look for opportunities to get in front of small groups, whether it’s an organization for which you are a member such as a local business chamber, civic group or other professional or neighborhood association that meets. They often encourage their members to participate as guest speakers and to coordinate local fundraisers and awareness events.


Consider reaching out to local media about the subject, either through the letters to the editor page of your area newspaper or to community reporters there or at local TV stations to make them aware of a family (or families) that could be in their market who are afflicted with EB. Be sure that if you do reach out and cite specific individuals or families by name that you have first gotten their permission to do so.


Launch your own community-wide fundraiser or if one is being planned in your city or a nearby community, take the reins of a team participating in such a walk event, bowl-a-thon or some other activity and spearhead fundraising efforts. Here again, you do not have to personally be diagnosed or have an immediate family member affected to go out to community patrons and tell them about why you’re investing your time, energy and dollars in the EB fundraiser and why they should get behind your efforts.


Another very useful way that you can make a difference and be heard when it comes to issues directly affecting EB families is to reach out to your elected officials at a community, state and federal level. How much do they know about EB and how their decision-making about health insurance-related legislation, for example, specifically impacts families facing rare diseases like epidermolysis bullosa? Do your own homework about the types of bills that may be in the works and consider appealing to these public servants for their support of EB families just like those who mean so much to you.


The key to any involvement you might embark on to support the EB community is to get involved wherever it feels right for you. Those impacted by the disease, both your friends or family, and the other families just like them will appreciate your efforts to shed some light on a subject for many who are still in the dark.

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