Too often, those with Epidermolysis Bullosa don't have a voice in the decisions that affect them and their families. debra of America's advocacy efforts aim to ensure that the concerns of the EB Community are always heard when public policies are made. 

Family

We are an effective voice for EB and other rare diseases among our elected leaders, government agencies, as well as private industry groups, who have called on us to speak at rare disease policy conferences, on Capitol Hill, and at State Capitols. 

We have developed a long-term strategy to benefit the EB Community. We’ve secured bi-partisan support at the federal and state levels for the cause, as well as developed key relationships with government agencies such as the National Institutes of Health (NIH). We’ve also deepened our existing partnerships with other advocacy organizations, such as Research!America, EveryLife Foundation for Rare Diseases, and the Rare Disease Legislative Advocates. 

How do you advocate for those affected by Epidermolysis Bullosa (EB)? 

debra of America uses two distinct strategies to advocate effectively for the EB Community: 

  1. Direct Advocacy entails stating a position to policymakers on specific legislation that affects individuals with Epidermolysis Bullosa. 
     
  2. Grassroots Advocacy involves stating a position on specific legislation and asking the public to contact the policymakers on this issue. Advocates will send letters, make phone calls and share information when policy making issues arise that affect individuals with epidermolysis Bullosa. 

Be an Advocate

Request an Official Proclamation

One way to engage your elected and public officials while also raising public awareness around Epidermolysis Bullosa is to obtain an Epidermolysis Bullosa Awareness Week Proclamation in your city or state. 

Learn more 

Communicate with Elected Officials 

Your representative in Congress and two Senators work for you. As a voting constituent, you have a tremendous ability to influence their legislative agenda and ow they vote on specific legislation.  

Contact your U.S. Senators

Contact your U.S. Representative 

Click here for Federal Legislative Information

Your State Legislature

Access proposed bills, track their progress, past bills, testimony, public hearings and contact information for your elected official by clicking on your state's link below. 

Contact your Legislators

Legislators love to hear about issues that matter to their constituents. They deal with hundreds of proposed pieces of legislation a year and can't be expected to know that a proposed law is or is not important to you unless you tell them. 

Contacting Legislators by Phone: 

  • Identify yourself by name and home address. 
  • Identify the bill you wish to talk about, by name and number. 
  • Briefly state your position and how you wish your legislator to vote. 
  • Ask for your legislator's stance on the bill or issue. Ask for a commitment to vote for your position, but don't argue if the legislator has an opposing view or is not yet decided. 
  • If your legislator needs additional information, call debra of America to get the additional information and get it to your legislator as soon as possible. 
  • Recognize that legislators are often away from the office, on the floor or in committee; so you may get an aide or be asked to leave a voicemail message. Whoever you speak with, use the same basic rules outlined above. If you'd rather leave a message than talk to a live body, call in the evening. 

 

Contacting Legislators by Email/Letter/Fax: 

  • Make clear your position and exactly what you want your legislator to do. 
  • Personalize your communication be telling how the legislation will affect you and others you know in your own words. Write briefly, on one subject at a time, and refer to your bills name and number. 
  • Sign your letter with your name and home address so that your legislator knows if you are a constituent. Also include your phone number so someone can contact you if he/she needs more information. 
  • When a legislator votes as you asked, send a thank you note. 

 

Requesting an In-Person Meeting: 

If you are interested in arranging a face-to-face meeting with a Senator or Congressperson, please contact debra of America at 212-868-1573 or at staff@debra.org. Our team can assist you and prepare you for the meeting.  

These meetings can take place in Washington, DC or in your home district. You may have a better chance of meeting with the Member in person if you call the district office and request a meeting when Congress is not in session. The summer months and the weeks at the end of the year after Congress has adjourned are especially good times to find your Congressional delegation in their districts. A larger number of planned attendees will also make it more likely that the Member will attend and will show that many constituents are concerned about housing.