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

Why Join A FIRST to Know Call?

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.  All calls are held at 8:00 PM Eastern Time. Do you have an idea for a FIRST to Know topic?  Contact Moureen Wenik, Program Director via this link 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.  There have been requests from our membership to add disease-specific calls to the calendar.  This is a great way to "meet" other families with the same ichthyosis type.  Dates and topics have been designated for the next series of FIRST to Know conference calls.  All calls are held in Eastern time and are phone calls only, so you only need a phone, not a computer.

To participate in a call, simply follow this link and check off the call dates in which you would like to participate. You will then receive an email with the call-in information.

Upcoming Calls

FIRST to Know

September 25 –Bathing with Microbubble Technology

October 23 – ARCI-lamellar type: Sharing Information

November 27 – How to Work with Your Insurance Company

December 18 - Palmoplantar keratodermas (PPK): Sharing Information

Facebook Chat

Join in the chat on the FIRST Facebook Group pages!  Members must be approved to be part of the group to participate.

Days and times will be posted in the group.


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

  • 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


January 31 – National Conference: What Are the Benefits of Attending?

February 28 – Harlequin ichthyosis: Sharing Information

March 20 – Babies, Toddlers and Skin Care: Tips to Make Care “Easier”

April 24 – Netherton syndrome: Sharing Information

May 22 - Understanding Occupational and Physical Therapy

June 12 – Erythrokeratoderma variablis (EKV): Sharing Information

July 24 – Grandparents: Helping Your Grandchild and Your Adult Children

August 28 – Sjögren-Larsson syndrome: Sharing Information


Sunday, February 15   Siblings of those affected with ichthyosis

Sunday, February 22     PPK: Connecting families

Sunday, March 1          Netherton syndrome

Sunday, March 22        EI: Connecting families

Sunday, April 19   IEP? 504? Making Sense of Your Child’s School Resources.

Sunday, May 3   X-linked Ichthyosis: Connecting Families

Sunday, May 17   Lamellar: Connecting Families

Sunday, May 31   Going to college?  How to Prepare for a Great Experience


Thursday, January 9 - Netherton syndrome: Meeting Each Other

Thursday, January 23 - Ichthyosis 101 – Understanding More About This Rare Disorder

Tuesday, February 4 - What is Going On with Research?

Thursday, February 20 - X-linked – Meeting Each Other

Thursday, March 6 - School Resources: Getting Your Child Ready for School

Thursday, March 20 - Lamellar: Meeting Each Other

Thursday, April 3 - Keeping Cool: Overheating Tips

Tuesday, April 15 - EI: Meeting Each Other

Sunday, May 18 - Vacation and Ichthyosis - Traveling and Managing Ichthyosis Away From Home

Sunday, June 1 - PRP - Families Connecting Together

June 29 - Teens - What's Up?

July 13 - XLI - Families Connecting Together

July 27 - College 101 - What to Expect When You Get to Campus

August 10 - Harlequin - Families Connecting Together

Sunday, September 21, 2014 - Lamellar:  Families Connecting

Sunday, October 12, 2014 - Darier disease:  Connecting Families

Sunday, October 26, 2014 - XLI:  Connecting Families

Sunday, November 9, 2014 - Harlequin:  Connecting Families


Thursday, February 21  -  Lamellar:  Connecting Families Together

Tuesday, March 5  -  Netherton syndrome:  Connecting Families Together

Tuesday, March 26  -  EI:  Connecting Families Together

Tuesday, April 9  -  X-linked:  Connecting Families Together

Thursday, April 25  -  Teens Rock:  An Open Dialogue for Teens, with Teens

Tuesday, May 7  -  Aging Skin:  How is Your Skin Changing?

Wednesday, May 22 - Darier Disease: Bringing a Community Together

Thursday, June 6 - Vulgaris: Connecting with One Another

Tuesday, June 20 - Time for College: Transitioning from HS to College

Wednesday, July 10 - Infections: What Are They?

Thursday, September 12 – Lamellar Families

Tuesday, September 24 – Laundry and Clothes Care

Thursday, October 10 – EI Families

Tuesday, October 22 - Itch

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