• Increasing ichthyosis awareness
• Increasing medical research funding
• Working toward improved treatments, genetic testing abilities and a cure

The Foundation's Advocacy Committee has been mapping out a focused plan to make ichthyosis more known in Congress. The first initiative is to educate congressmen about ichthyosis 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 (NIH).

2. Encourage NIH to increase skin disease research, specifically, ichthyosis research

When do we do this? 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 this take place? If you are in or near 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 (ichthyosis fact sheet)
• Follow-up

Basics for a Congressional visit, a printable fact sheet on ichthyosis, and a sample letter written to Congress are available by clicking the buttons to the right.

Please contact the Foundation's national office by clicking here if you have any questions or are planning to contact your congressional member on behalf of increased ichthyosis research.