Ways to Support EB Families

Whether you are living with EB every day or know someone who is, there are things we can do to support not only those in our lives impacted by the disease but others and their families, as well.

  • Share, share, share. If you’re on various social media platforms, whether it’s Twitter, Facebook, LinkedIn, Google+ – any of them! – you have an invaluable opportunity to tell people about something they probably aren’t familiar with. Use your reach to educate and seek potential supporters for EB- fundraisers or campaigns.
  • Reach out to your friends facing EB or to organizations. If you want to help do something, the quickest way to get there is to ask. Go directly to the source and find out where there is the most need, and how you might lend a hand.
  • Lend your talents. Perhaps you have a particular skill or resource that could make a difference to a specific family, group of families or even an EB-focused organization. Put out your message to those parties for whom you might be of service and if you’re truly committed to making a difference, consider offering them pro bono or discounted.
  • Rally for fundraisers. Even if a fundraiser is across the country or heck, across the world, there is nothing stopping you from leading a grassroots effort of your own to support that fundraiser. Create your own arm of support in your community and raise funds and awareness for an EB charity you follow. Or still yet, reach out to those fundraiser organizers directly and ask them if there are other needs that they have for their event such as food, drinks or professional services of some kind and offer to provide resources to help them with that specific need.

There are so many ways all of us can support the EB community, even when we are not directly affected. If we maximize our resources to do it, whether we are using our channels of influence to their fullest or directly promoting efforts to grow research dollars or family support, we can do so much collectively. So we encourage you to find you own unique niche for making a difference.