Have you been on a FIRST to Know?  It's a great way to connect...

Why Join A FIRST to Know Call or Meeting?

Sharing tips, stories and challenges with others, makes living with ichthyosis just a little bit easier.   The FIRST to Know calls are a great way to “meet” other families and individuals.   Each call is centered on a topic or subject, and lasts for one hour.  You can decide which call is interesting to you and phone in. You can be an active participant, or call in and listen to what others are saying.  Do you have an idea for a FIRST to Know topic?  Contact the FIRST office via email or by telephone at 1-800-545-3286.

The past FIRST to Know conference calls have been well received by our members.  It is wonderful to have individuals talking to one another, sharing tips, and sharing stories and challenges.  This is a great way to "meet" other individuals families.  All events are held in Eastern time.  We now have the opportunity to participate via video.  So you can either call in on your phone, or video call from your smart phone or a computer.

CLICK HERE For Upcoming Topics & Dates




Tips on how to make the most of the FIRST to Know Event

  • Call from a quiet location.
  • Don't put your phone on hold if you have on-hold music or advertisements, as this will play back into the conference room.
  • Disable your phone's call waiting (by dialing *70 before the conference number), otherwise the beeping may disrupt the call.
  • Consider keeping your phone on mute (by pressing *6) to keep out extraneous background noise.
  • You'll want to have as strong a connection to the conference as possible. For example, a landline will sound better than a cell phone or VoIP line.

Past calls


FIRST to Know:  Marc Benedetto, NYPD - November 2, 2020

Ichthyosis & Adoption - October 5, 2020

Ichthyosis & Activities - August 27, 2020

Ichthyosis & School - August 3, 2020

What's New in Ichthyosis Research? - May 21, 2020


Ichthyosis & COVID-19 - March 18, 2020


April 29 - Vulgaris & X-linked / Teens & Grandparents

June 10 - ARCI-lamellar & harlequinCIESLS, and Ichthyosis en Confetti 

July 29 - 7pm - CHILD, EI, EI w/ PPK & TTD
                  8pm - Darier, KID & Netherton, EKV

August 26 - 7pm - ARCI-lamellar & harlequin 
                  -  8pm -CIESLS, and Ichthyosis en Confetti   

September 30 - 7pm - CHILD, EI, EI w/ PPK & TTD
                         - 8pm  - Darier, KID & Netherton, EKV

October 28 - 7pm - Vulgaris & X-linked
                    - 8pm - Teens & Grandparents

November 18 - 7pm - ARCI-lamellar & harlequin
                       - 8pm - CIESLS, and Ichthyosis en Confetti

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