Regional Support Network

The Regional Support Network allows families and individuals to come together and support each other through the sharing of knowledge, experience, and advice. It is our hope that all who join this caring community will find comfort in knowing that you are not alone on your journey.

Why a Support Network?

Individuals with ichthyosis, and parents of children with ichthyosis, often have never met another person who shares the disorder. This can lead to feelings of isolation. A support network gives people the opportunity to talk to others who have experience living with ichthyosis, and to share their feelings with others who understand.

What are the goals of the Regional Support Network?

The goals of the regional support network (RSN), a grassroots network of FIRST members, is to provide to other members and families dealing with the physical, psychological, and social concerns of living with ichthyosis with the following:

  • moral support
  • information and practical advice
  • guidance
  • education and resource information
  • increase awareness and grassroots events

As a region, grassroots and awareness events will be stronger, by gaining the support of the members within the region to work together and support and assist one another. There is strength in numbers, and our Regional Support Network will hold this statement true.

Regional Support Volunteers and Ambassadors

The regional support volunteer connects with other families and shares personal stories and concerns. Members can support each other through the sharing of knowledge, experience, and advice. It is our hope for all who join this caring community will find comfort in knowing that you are not alone on your journey.

A FIRST ambassador contributes to strengthening programs and resources which they have knowledge and experience.  Ambassadors will make an impact in the subject areas of:

  • education
  • health care/insurance
  • physician recruitment
  • advocacy
  • fundraising
  • small local member gatherings

How does the regional support network work?
The calls FIRST receives will be matched with the regional volunteer within the geographic location that is the best fit for the caller. Understanding the rarity of ichthyosis, individuals will be connected with volunteers by disease type within the region and then by social profiles like age, gender, marital status, family size, ages of children, etc. In circumstances when that is difficult, FIRST will work to connect individuals within neighboring regions.

How does the ambassador program work?
Ambassadors will pick from the subject areas which align with their experiences, and which they have the most knowledge. They will work with FIRST staff to accomplish assigned tasks.

How can I become involved in the Regional Support Network?

All members of the ichthyosis community are encouraged to become involved with the RSN as a support network volunteer and when possible an ambassador.  Click on this link to view the description of program areas, and pick the areas you have the most understanding and interest in volunteering for.  You do not have to be an expert in an area, but should have experience or an interest in learning.

The RSN is managed by FIRST Program Director, Moureen Wenik. If you would like to be contacted by a Regional Support Volunteer please contact Moe via this link, or by telephone at 800.545.3286.

 



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