Advocacy

WHAT is advocacy?
Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy.

WHY should I participate?
Becauseit is 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 I 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.
  • Introduce yourself to your representative and concisely tell them how ichthyosis has affected you.  Write a letter, asking for a meeting in the local district office or attend a town hall meeting in your area.
  • Call the local district offices of your elected representatives or check out their websites to learn more about their town hall meeting schedule.
  • When you meet with the representative, leave behind a FIRST brochure for their reference.
  • Don't forget to personalize your story.
  • For a sample letter to members of the US congress, or your state or local elected officials, click here.
2.  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.
3.  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.

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