Date: 05/17/2022

After feedback from FIRST members, a small volunteer task force was created to update our Facebook group terms, particularly around privacy.  These new terms will be published on all of FIRST’s Facebook Groups.  We thank those of you who voiced your opinions and participated in the meeting. The updated terms were reviewed and approved by FIRST's Board of Directors. It is FIRST's intention to protect our members while also for allowing sharing of important information. 

FIRST screens "requests to join" so that each group remains as it was intended. For instance, each private group has it's own demographics (Dads, Moms, Parents, Adults, Women and Friends and Family). A "Contact Us" form must be filled out before requesting to join a group(s).

Updated Terms:

To maintain a safe, respectful and supportive environment for all of FIRST’s private closed groups, the following rules have been implemented.

To join, please

• Register first here:

• Then request to join the group. If you have any questions, they may be sent to

• If you qualify for the group that you requested, you will be added.

This is an official Facebook Group of the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST). This group is one of many ways to connect, in a safe forum, and to gather knowledge from the ichthyosis community.

FIRST and its members believe content posted in Facebook groups can be extremely helpful to other individuals and families, including those not registered in the groups.  When appropriate, FIRST will notify group members that it would like permission to use de-identified and summarized content to post on other platforms (E News, other social media, website) within the thread.  The notification will include a draft of the post and indication where it will appear.  Members not wishing to share their post, will make a post declining permission and their information will be omitted.

Members are not permitted to reproduce or share content from any private FIRST group without permission from the original posting member.

Terms: By accessing or using this group, you agree to comply with Facebook Terms and Conditions. We respect the interests of FIRST fans in communicating themselves openly and honestly on our Facebook group. As a host, we have the responsibility to keep the conversation fair and civil.

Guidelines: At its sole discretion, FIRST reserves the right to remove any postings that do not adhere to our guidelines, we may also mute or remove group member who violates the guidelines repeatedly.

Post and conversations should be respectful; the posting of any of the following activity will result in post removal:

1. Bullying, harassing, stalking, threatening, abusing, language or content which is slanderous to group members, the FIRST organization, FIRST Board, FIRST employees or others

2. Repetitive posts on the same topic, even if initiated by unique users

3. Spamming, self-promotion, asking to PM, link baiting (embedding a link in your post to draw traffic to your own site or business)

4. Fraudulent, deceptive, misleading, obscene, offensive, violent or unlawful material or information

5. Hate language or negative comments which target another with respect to race/ethnicity, religion, gender, nationality, or political beliefs

6. Personal information of any kind (including email addresses, phone numbers etc.)

7. Any consistent and patterned effort to disrupt the community's healthy conversation

8. Photos containing inappropriate content, including nudity, regardless of intent

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is not responsible for information or advice provided by others, including information on FIRST’s social media sites, websites that link to Association sites, and on third party sites to which the Foundation links. Fan-produced content on the FIRST Facebook Group does not necessarily reflect the opinions of FIRST.

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