Government Advocacy

Too often those affected with Epidermolysis Bullosa don't have a voice in the decisions that affect them and their families. debra of America's advocacy efforts are aimed at making sure that the concerns of those affected by Epidermolysis Bullosa are always heard when public policies are made.

In addition, the non-profit organization EB Action Network (EBAN) advocates on behalf of a Wound Care Bill to ensure insurance coverage for the wound care supplies needed in the care of people with EB. debra of America supports EBAN’s efforts to bring this Bill to fruition.

How Does debra of America Advocate For Those Affected By Epidermolysis Bullosa?

debra of America uses two distinct strategies to advocate effectively for those affected by Epidermolysis Bullosa:

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:


How to 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 how they vote on specific legislation.

TO CONTACT YOUR U.S. SENATORS:

Click on www.senate.gov

TO CONTACT YOUR U.S. REPRESENTATIVE:

Click on www.house.gov

FOR FEDERAL LEGISLATION INFORMATION:

Click on www.thomas.loc.gov

YOUR STATE LEGISLATURE

You can access proposed bills, track their progress, past bills, testimony, public hearings and contact information for your elected official, click on your state's link below.

ALASKA
http://w3.legis.state.ak.us/home.htm?

ALABAMA
http://www.legislature.state.al.us/

ARKANSAS
http://www.arkleg.state.ar.us/

ARIZONA
http://www.azleg.state.az.us/

CALIFORNIA
http://www.leginfo.ca.gov/

COLORADO
http://www.leg.state.co.us/

CONNECTICUT
http://www.cga.ct.gov/

DELAWARE
http://www.legis.state.de.us/Legislature.nsf/?Opendatabase

FLORIDA
http://www.leg.state.fl.us/Welcome/index.cfm

GEORGIA
http://www.legis.state.ga.us/

HAWAII
http://www.capitol.hawaii.gov/

IOWA
http://www.legis.state.ia.us/

IDAHO
http://www.legislature.idaho.gov/

ILLINOIS
http://www.legis.state.il.us/

INDIANA
http://www.in.gov/legislative/

KANSAS
http://www.kslegislature.org/legsrv-legisportal/index.do

STATE OF KENTUCKY
http://www.lrc.state.ky.us/home.htm

LOUISIANA
http://www.legis.state.la.us/

MASSACHUSETTS
http://www.mass.gov/legis/legis.htm

MARYLAND
http://mlis.state.md.us/

MAINE
http://janus.state.me.us/legis/

MICHIGAN
http://www.michigan.gov/

MISSOURI
http://www.moga.state.mo.us/

MONTANA
http://laws.leg.state.mt.us/pls/laws05/LAW0200W$.startup

NEBRASKA
http://www.nol.org/billtracker/

NEVADA
http://leg.state.nv.us/

NEW HAMPSHIRE
http://www.gencourt.state.nh.us/ie/

NEW JERSEY
http://www.njleg.state.nj.us/

NEW MEXICO
http://www.state.nm.us/

NEW YORK
http://assembly.state.ny.us/

NORTH CAROLINA
http://www.ncga.state.nc.us/

NORTH DAKOTA
http://www.state.nd.us/lr/assembly/59-2005/

OHIO
http://www.legislature.state.oh.us/

OKLAHOMA
http://www.ok.gov/

OREGON
http://www.oregon.gov/

PENNSYLVANIA
http://www.legis.state.pa.us/

RHODE ISLAND
http://www.rilin.state.ri.us/

SOUTH CAROLINA
http://www.scstatehouse.net/

SOUTH DAKOTA
http://legis.state.sd.us/sessions/2005/index.aspx

TENNESSEE
http://www.legislature.state.tn.us/

TEXAS
http://www.capitol.state.tx.us/

UTAH
http://le.utah.gov/

VERMONT
http://www.leg.state.vt.us/

VIRGINIA
http://legis.state.va.us/

WASHINGTON
http://www1.leg.wa.gov/legislature

WISCONSIN
http://www.legis.state.wi.us/

WEST VIRGINIA
http://www.legis.state.wv.us/

WYOMING
http://legisweb.state.wy.us/


Tips for Contacting 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 voice mail 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 Letter/FAX/Email:

  • 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 [at] debra [dot] org. Our team can assist you and prepare you for the meeting. These meeting 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.

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