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.

We had a big group of patient advocates from CSD along with advocates from the American Academy of Dermatology Association, on Capitol Hill.

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.

Mary and a patient advocate for eczema were two of many advocates who talked to Congress about the importance of skin cancer prevention.

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.

Becky stands at a podium with a screen showing her presentation.
I shared with other advocates what I have learned from my experience in advocating at home and in D.C. for the Ensuring Lasting Smiles Act.

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.

My boys, Ryder and Aidan, joined me when we met Congressman John Joyce from Pennsylvania. We explained why ELSA was needed and asked for his support.

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.


2 comments on “Teaming Up with Other Patient Advocates on the Hill”

  1. 1
    Tammy Everidge on October 22, 2019

    I would love to help!! I have two daughters with Ectodermal dysplasia.

    1. 2
      Jodi Edgar Reinhardt on October 22, 2019

      Hi, Tammy. We are thrilled to have your help. the first thing to do is to register as an advocate here: 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: Thanks, Jodi, Director, Marketing and Communications

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