Last week Mary Fete, executive director, my family and I had the privilege of attending the American Academy of Dermatology Association Legislative Conference in Washington, D.C. with other members of the Coalition of Skin Diseases.
The NFED has been a member of the CSD for many years. It’s a coalition of patient advocacy groups which addresses the needs and concerns of individuals who have skin diseases.
During training, I shared tips with advocates on how to successfully advocate and build relationships with legislative offices. Our team spent the day on Capitol Hill educating legislators on the importance of skin cancer prevention and access to sunscreen and asking for affordable access to pharmaceuticals.
Speaking Up for Elsa
We also shared information on the Ensuring Lasting Smiles Act (ELSA) (H.R.1379/S.560), and asked members of Congress to co-sponsor this important bill.
Our advocates also met with several members of Congress and thanked them for supporting and co-sponsoring the ELSA. We asked for help to move ELSA forward.
How You Can Help
Our NFED team is capitalizing on every opportunity we can to drum up support for ELSA. As of today, we have 208 of 435 representatives in the House as co-sponsors and 26 of 100 senators.
You can advocate, too. Help us right now by emailing or calling your legislators. Use our easy online tool. Enter your name and address and we fill in the rest.
TAKE ACTION FOR ELSA
I would love to help!! I have two daughters with Ectodermal dysplasia.
Hi, Tammy. We are thrilled to have your help. the first thing to do is to register as an advocate here: https://nfed.org/get-involved/advocate/register-as-an-advocate/. We will alert you via email when it’s time to action and advocate. You can learn more here about what you can do now to take action: https://nfed.org/get-involved/advocate/. Thanks, Jodi, Director, Marketing and Communications