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?
Because it 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 possibly even a cure.


Due to the pandemic, The American Academy of Dermatology held their 2020 annual Legislative Day virtually rather than in person in Washington, D.C. We reached out to our membership to see if people would be interested in participating through the Coalition of Skin Diseases. We had a fantastic response and 9 people signed up to advocate for all of those with ichthyosis and related skin types. Here are two participants comments regarding their experiences. FIRST will offer more opportunities to “use your voice” for all of our members. Your voice is so important!

“I think our meetings with Congress went really well! I got the opportunity to share my experience of living with one of the rarest forms of Ichthyosis with everyone we spoke to. It was such a blessing to be able to share my experience and it was so humbling to speak and advocate for the wider rare community. Thank you for giving me the opportunity to do this. I hope I get to do it again!”

This is a screenshot I took of our meeting with Congressman Mike Doyle, the representative from my district. 
“Overall it was a great experience – So glad to be a part of the group taking action to preserve patients’ access to care and mitigate the financial distress facing dermatology   practices due to the pandemic. I only wish more of our state representatives and senators were in attendance.”
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 ihttps://rarediseases.org/advocate/policy-priorities/contact-representatives/chthyosis 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 to a local weekly paper or a neighborhood newsletter that may be more likely to publish human interest stories.
4.  Offer to educate a group (doctors, educators, workplace etc.)
  • Raising awareness of ichthyosis to a group of people will help will help to make it easier for those who are affected with ichthyosis.

National Organization for Rare Diseases Advocacy tool kit https://rarediseases.org/advocate/policy-priorities/contact-representatives/

Share This Page: