Advocacy

WHY should you participate?

Being a rare disease, ichthyosis is not well recognized, understood or researched. Increased education of our communities and elected officials will help lead to better quality of life for ichthyosis patients, better treatments and a possibly even a cure.

WHAT can you do?

1. Write, call or visit your local, state and federal elected officials

Your elected representatives are most likely not going to hear about ichthyosis unless you educate them! Ways to contact your representatives include sending a letter, asking for a meeting in the local district office or attend a town hall meeting in your area. Introduce yourself to your representative and concisely tell them how ichthyosis has affected you. Leave behind a FIRST brochure for their reference. Don’t forget to personalize your story! Call the local district offices of your elected representatives or check out their websites to learn more about their town hall meeting schedules.

2. Write a letter to the editor of your local paper.

Raising awareness of ichthyosis will help lead to scientific advancements and better treatments. Consider writing a local weekly paper or a neighborhood newsletter that may be more likely to publish human interest stories.

3. Ask your elected representatives to support a proclamation supporting ichthyosis awareness.

Many local and state governments issue proclamations on topics important to their community. The proclamation is simply a formal announcement that raises awareness of the topic in your area and hopefully, beyond.

« Back to Previous Page

More About FIRST:

About FIRST

Thank You For Your Interest In FIRST

We are happy to provide you with access to our vast array of educational literature about ichthyosis. Please take a moment to help us get to know you so we can better meet your needs and those of the ichthyosis community. Required fields are marked with (*).

Name: *
Address: *
City: *
State: *
Zip Code: *
Phone:
Email: *
Comments:
How did you hear about our website?: