Peer Support Navigator Program
Connecting individuals and families with support, understanding and trusted resources
CONTENT SPONSORED BY
Living with ichthyosis or a related skin condition (now collectively referred to as epidermal differentiation disorders, or EDDs) can be challenging in ways that extend beyond physical symptoms.
Daily care routines, uncertainty about the future, social challenges, and feelings of isolation can affect emotional well-being for both individuals and families. From early childhood and school years to adulthood, relationships and caregiving, each stage of life brings new challenges, questions and opportunities for support.
FIRST’s Peer Support Navigator Program was created to connect people affected by ichthyosis and related skin conditions with trained volunteer peers who understand these experiences firsthand. Through one-on-one support, shared experiences and practical guidance, navigators help individuals and families feel more informed, connected and supported.
For more than 45 years, FIRST has served as a trusted source of information, resources and connection for individuals and families affected by ichthyosis. The Peer Support Navigator Program is a natural extension of this commitment, formalizing opportunities for one-on-one connection, shared learning and peer support.
Meet Our Navigators, Request Peer Support
Become a Peer Support Navigator
Daily care routines, uncertainty about the future, social challenges, and feelings of isolation can affect emotional well-being for both individuals and families. From early childhood and school years to adulthood, relationships and caregiving, each stage of life brings new challenges, questions and opportunities for support.
FIRST’s Peer Support Navigator Program was created to connect people affected by ichthyosis and related skin conditions with trained volunteer peers who understand these experiences firsthand. Through one-on-one support, shared experiences and practical guidance, navigators help individuals and families feel more informed, connected and supported.
For more than 45 years, FIRST has served as a trusted source of information, resources and connection for individuals and families affected by ichthyosis. The Peer Support Navigator Program is a natural extension of this commitment, formalizing opportunities for one-on-one connection, shared learning and peer support.
Why Peer Support Matters
The impact of ichthyosis is not only physical—it can affect emotional health, relationships, confidence and quality of life.
A recent survey of the ichthyosis community found:
- 9 in 10 people report the condition has impacted their emotional well-being
- 8 in 10 people say ichthyosis affects their social life and relationships. Support from family friends, peers and mental health professionals can make a meaningful difference.
What is a Peer Support Navigator?
Peer Support Navigators are trained volunteers who:
- Live with ichthyosis or a related skin condition, or care for someone who does
- Share their lived experiences in a supportive and respectful way
- Provide encouragement and emotional support
- Help individuals and families identify and access helpful resources, and self-advocate
- Understand the importance of confidentiality, active listening and healthy boundaries
Peer Support Navigators are not healthcare professionals and do not provide medical advice, diagnosis or treatment recommendations.
The Power of Peer Support
Research consistently show that, among other benefits, social connection and peer support can help:
- Reduce feelings of isolation
- Build self-confidence and self-advocacy skills to better navigate everyday challenges
- Feel isolated or overwhelmed
- Improve coping
- Equip people with information or questions to ask that helps with disease management and decision-making
This is especially true for people living with rare and chronic conditions.
While every experience is unique, talking with someone who understands many of the same challenges and emotions that can come with living with ichthyosis or caring for a loved one who does can provide comfort, perspective and hope.
While every experience is unique, talking with someone who understands many of the same challenges and emotions that can come with living with ichthyosis or caring for a loved one who does can provide comfort, perspective and hope.
How a Navigator Can Help
A Peer Support Navigator may be able to help if you:
- Are newly diagnosed and looking for support
- Have questions about living with ichthyosis day-to-day
- Feel isolated or overwhelmed
- Want to connect with someone who has faced similar experiences or life transitions
- Are a parent or caregiver seeking guidance from another family
- Need help identifying FIRST resources and programs
Navigators provide a listening ear, share personal experiences and help individuals and families feel supported throughout their journey.
“It’s been emotionally challenging to live with this condition, but support from my family and peers has helped me stay strong. Sharing my experiences openly and being accepted for who I am has given me strength.”
Whether you are looking for support or are interested in supporting others, FIRST’s Peer Support Navigator Program can help foster meaningful connections within the ichthyosis community.
Connect with a trained volunteer who understands many of the experiences and challenges that can come with ichthyosis.
Share your experience, provide encouragement and help strengthen the ichthyosis community.
You are not alone
Whether you are newly diagnosed, navigating a life transition, supporting a child or managing ongoing challenges, support is available. FIRST’s Peer Support Navigator Program is designed to help individuals and families feel seen, heard and connected.
