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, Senior Director, Programs & Research, 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.  We now have the opportunity to participate in video calls.  So you can either call in on your phone, or video call from your smart phone or a computer.

To participate in a call, simply click the link next to each call to register for that call. You will then receive an email with the call-in information.

Upcoming Calls

FIRST to Know

June 10

7pm - Lamellar & Harlequin    https://zoom.us/meeting/register/47cda040c907b1aecde7dc3c8da9331e
8pm - CIE , SLS, and Ichthyosis en Confetti https://zoom.us/meeting/register/a535b3e382596dda7c24e00bf0acd2b8

July 29

7pm - CHILD, EI, EI w/ PPK & TTD  https://zoom.us/meeting/register/57c271ac4ae2f77a8c34be5db4a05ad8
8pm - Darier, KID & Netherton, EKV  https://zoom.us/meeting/register/ddc01429a6a44cee34538d7d4481ef37

August 26

7pm - Lamellar & Harlequin    https://zoom.us/meeting/register/47cda040c907b1aecde7dc3c8da9331e
8pm -CIE , SLS, and Ichthyosis en Confetti  https://zoom.us/meeting/register/a535b3e382596dda7c24e00bf0acd2b8

September 30

7pm - CHILD, EI, EI w/ PPK & TTD  https://zoom.us/meeting/register/57c271ac4ae2f77a8c34be5db4a05ad8
8pm - Darier, KID & Netherton, EKV  https://zoom.us/meeting/register/ddc01429a6a44cee34538d7d4481ef37

October 28

7pm - Vulgaris & Xlinked  https://zoom.us/meeting/register/53ce3739309da5697510d14dfea9e911
8pm - Teens & Grandparents  https://zoom.us/meeting/register/6c267b14f0f9899bc5b9141539e44ee6

November 18

7pm - Lamellar & Harlequin    https://zoom.us/meeting/register/47cda040c907b1aecde7dc3c8da9331e
8pm - CIE , SLS, and Ichthyosis en Confetti  https://zoom.us/meeting/register/a535b3e382596dda7c24e00bf0acd2b8

Facebook Chat

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

Days and times will be posted on the page.

 

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

2017

January 29 – Sjögren-Larsson syndrome: Sharing Information
February 19 – Harlequin ichthyosis: Sharing Information
March 19 – ARCI-lamellar: Sharing Information
April 23 – Netherton syndrome: Sharing Information
May 21 - Palmoplantar keratodermas (PPK): Sharing Information
June 25 – Erythrokeratoderma variablis (EKV): Sharing Information
July 16 – X-Linked ichthyosis: Sharing Information
August 27 – Ichthyosis vulgaris: Sharing Information
September 24 – National Conference: What Are the Benefits of Attending?
October 29 – Darier Disease: Sharing Information

2016

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
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

2015

February 15   Siblings of those affected with ichthyosis
February 22     PPK: Connecting families
March 1          Netherton syndrome
March 22        EI: Connecting families
April 19   IEP? 504? Making Sense of Your Child’s School Resources.
May 3   X-linked Ichthyosis: Connecting Families
May 17   Lamellar: Connecting Families
May 31   Going to college?  How to Prepare for a Great Experience

2014

January 9 - Netherton syndrome: Meeting Each Other
January 23 - Ichthyosis 101 – Understanding More About This Rare Disorder
February 4 - What is Going On with Research?
February 20 - X-linked – Meeting Each Other
March 6 - School Resources: Getting Your Child Ready for School
March 20 - Lamellar: Meeting Each Other
April 3 - Keeping Cool: Overheating Tips
April 15 - EI: Meeting Each Other
May 18 - Vacation and Ichthyosis - Traveling and Managing Ichthyosis Away From Home
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
September 21 - Lamellar:  Families Connecting
October 12 - Darier disease:  Connecting Families
October 26 - XLI:  Connecting Families
November 9 - Harlequin:  Connecting Families

2013

February 21  -  Lamellar:  Connecting Families Together
March 5  -  Netherton syndrome:  Connecting Families Together
March 26  -  EI:  Connecting Families Together
April 9  -  X-linked:  Connecting Families Together
April 25  -  Teens Rock:  An Open Dialogue for Teens, with Teens
May 7  -  Aging Skin:  How is Your Skin Changing?
May 22 - Darier Disease: Bringing a Community Together
June 6 - Vulgaris: Connecting with One Another
June 20 - Time for College: Transitioning from HS to College
July 10 - Infections: What Are They?
September 12 – Lamellar Families
September 24 – Laundry and Clothes Care
October 10 – EI Families
October 22 - Itch

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