National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Advocacy

What is Advocacy?

Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support. That is what this page on our Web site is devoted to:

       · Increasing ectodermal dysplasias awareness
       · Increasing medical research funding
       · Working toward improved treatments, genetic testing abilities and a cure

The NFED would like to make the ectodermal dysplasias more known in Congress. Educate your congressmen about ectodermal dysplasias and let them know that constituents in their districts are affected by the disease and more research funding is needed.

Who do we want to contact?

Members of the U.S. House of Representatives and your two U.S. Senators. To access this information for your specific location, click here for the House of Representatives and click here for the United States Senate.

What do we want to ask for?

1. Ask to support increased funding for medical research at the National Institutes of Health.
2. Encourage NIH to increase skin and dental disease research, specifically, ectodermal dysplasias research.

What do we want to ask for?

Now is the time to get to know your member and staff. The Budget process takes place during February 1-April 15 and the Appropriations process typically works like this:

       · February–May: Hearings and discussion
       · May–September: Real numbers come out
       · Oct. 1: Beginning of new fiscal year

Where does all of this take place?

If you are in Washington, D.C., you can make an appointment to visit your members' office on Capitol Hill. If not, you can meet with your member and/or their staff at their local district offices in your area.

How should I contact them?

You can email your member by visiting www.house.gov/writerep. Other ways to contact your member are by sending a faxed letter (regular mail may be slow), setting up a personal meeting, talking over the telephone, or submitting written testimony to the House Appropriations Committee on Labor, Health and Human Services.

Here are the basics:

       · Introduction: state your name and address, reinforce that you are a voting constituent
       · Be prompt, be quick and be prepared
       · Clearly state the ask: increased medical research funding
       · Personalize!!!!
       · Bring visuals (ectodermal dysplasias fact sheet, personal photos)

A sample letter to Congress is below to get you started.

Sample Letter to Congress

Date Here

The Honorable__________
 House (or Senate) Office Building
Washington, DC 20515 (20510)

Dear Congressman/Senator                                             :

As a constituent who votes, I am writing about an issue that is very important to me, medical research funding. Specifically, I am writing to urge you to support a 5% increase in funding for the National Institutes of Health (NIH) during fiscal year 2011.

I (my child, my friend, etc) have a rare disease called ectodermal dysplasia. Research at the NIH is key to making much needed progress in treatments and, hopefully, a cure for ectodermal dysplasia.

The ectodermal dysplasias are a group of genetic skin diseases that affect 2 derivatives of the ectoderm (hair, teeth, nails and sweat glands). My family is affected by ectodermal dysplasia [personalize]. As you can imagine, life with this condition comes with many physical complications, as well as, social and emotional ones.

Research on the genetics of the ectodermal dysplasias and improved treatments is vitally needed. The recent doubling of the NIH budget led to great advances in research for some of the ectodermal dysplasias. However, there is still much work to be done. [Personalize with a few sentences]

Investing in research at NIH will lead to better treatments and better lives for patients living with rare diseases like ectodermal dysplasias. Please support an increase in NIH funding.

Thank you for considering my input.

Sincerely,

Your name

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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
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