Every day, the National Foundation for Ectodermal Dysplasias (NFED) staff receives calls, emails and social media messages about the terrible struggles families have getting coverage for their dental care. It is the number one call that we receive in our office. Insurance coverage issues have plagued our community for decades. This insurance coverage battle has gone on for far too long. It is time for this to end. The time is NOW!

There is a way that you could help put an end to the insurance coverage nightmare for all families living with ectodermal dysplasias and congenital anomalies. Will you help? Will you take a few minutes out of your week to make a difference?

As you know, Senator Tammy Baldwin of Wisconsin will be introducing the Ensuring Lasting Smiles Act (ELSA) soon. This bill will close a loophole in insurance coverage and address the excessive insurance denials for individuals with congenital anomalies who require complex oral care and surgeries.

In order to make this Bill a reality, we NEED your help and support.

Each and every one of you has the chance to change history. It only takes one person or family to share their unique and individual story to make an impact on a legislator and their staff.

It’s time to advocate!

Contact Your Senator

You can use our new advocacy tool to email or call your federal senator.  This great resource makes it easy to find out who your senator is and connect with them. It only takes a few clicks and a few minutes.

ONE Wisconsin family reached out to Senator Baldwin to get this started. ONE Minnesota family garnered the support of their Congressman. And, ONE Iowa family garnered the support of their Congressman.

We need you to step up to the plate and send the message that it is time for change. Will you be the ONE family in your state that helps make a difference?

Register as an NFED Advocate

Becoming an NFED advocate is easy. Just fill out this short form to register as an NFED advocate. By doing so, you will receive email alerts as to what you can do to raise your voice for change.

Join Us on Capitol Hill

We hope to have individuals from every state attend the second annual Ectodermal Dysplasias Advocacy Day on Capitol Hill on Wednesday, July 18. We need to march a large number of people up to Capitol Hill! Register now to participate.

Connect With Your Advocacy State Lead

Over the past few years, the NFED staff, the NFED Family-Driven Legislative Advocacy Committee, and the Advocacy State Leads have been working hard on this issue. Please watch for upcoming emails and social media posts. Click here to find out who the advocacy lead for your states is and connect with them.

In the upcoming months, we will sending advocacy action updates asking families to participate. You must help raise awareness and educate your legislators on ectodermal dysplasias and the upcoming Bill. I am asking you to build relationships with your legislative offices and follow up with them. It will take more than one letter to ensure you have your legislator’s attention. It will take multiple contacts, over and over again.

Together, we are on a mission to help all individuals who have this struggle to get insurance coverage for the dental challenges associated with ectodermal dysplasias.

Can we count on you? We hope you are up for the challenge.

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