Community
FIRST has numerous ways to connect with other families, individuals, and ichthyosis experts! Our national conferences, FIRST to Know and New Member Orientation video events, and Facebook Groups are a great way to find tips, ask questions, make friends and meet medical experts that are truly “in the know” about your condition. Connecting with the others can make all the difference in coping and living with your condition.
Join Our Community
Once you complete the contact form, you will enjoy all the benefits of being connected with FIRST, including online access to FIRST’s Ichthyosis Focus quarterly newsletter, e-news regarding ichthyosis research, patient support meetings and conferences, inspiring member stories and best practices for skin care with ichthyosis or a related skin type.
Meet Our Members
Here is your opportunity to get to know our truly remarkable families and share their inspiring stories.
Volunteer Opportunities
As a FIRST volunteer, you can connect with others in our community in a way that helps you and the community. It only takes a little time to make a big difference.
Grassroots Fundraising
Fundraisers are a great way for your organization, company, or group of friends to help the families we serve. In addition, your event will promote awareness of ichthyosis in your community and bring friends, families and other FIRST members in your area together.
Advocacy
Because ichthyosis is a rare disease, it’s 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.
FIRST Spirit Awareness Merch
FIRST has exciting items available to create awareness! These items are designed to be useful in your daily life and also create awareness about FIRST and ichthyosis.
