Incontinentia Pigmenti Families

12/02/2021

To improve outreach efficiency this page has been paused. It will be removed by Dec 10.

Please join:
Incontinentia Pigmenti Support Group and
Incontinentia Pigmenti (IP) - NFED and
National Foundation for Ectodermal Dysplasias

11/03/2021

This page will be shut down 30 Nov 2021
This is being done to make our outreach more efficient.
Please be sure to join the following pages:
Incontinentia Pigmenti Support Group and
National Foundation for Ectodermal Dysplasias

03/28/2021

USA IP FAMILIES.... WE NEED AN HOUR OR TWO!!

Here is your chance to advocate for our kiddos virtually!!! NFED has been working endless hours for years to get legislation passed to ensure dental issues from disorders such as IP is covered!!! All you need to do is register in the next day or two, then “show up” (virtually) April 28!!!

Come on IPers... we are always calling for research, coverage, acknowledgement... these events are the only way it can happen. And success IS in numbers!!! So please register... screen shot and share with family and friends... share from the NFED site. Let’s unite as a group... and really represent the IP side of NFED!!!!

We have the numbers in this group to have an easy 100-200 representing!!! This hour or two can make all the difference for you, your kiddos, even grandkids!!!

https://www.nfed.org/get-involved/advocate/day-on-the-hill/?fbclid=IwAR05LEoX9jexYTse5KfgaG4-ZsZUWLqq8GODPvJecodi3VjrlEpV-Ur6xMc

Register now for NFED’s Virtual Advocacy Day on June 24, 2020. Youth and adult advocates can help us pass the Ensuring Lasting Smiles Act this year.

07/20/2020

To join the private support group please send a message specifying your ties to IP to Laura Strong.

10/16/2019

Anyone have the diagnosis of IP AND Glass Bone Disease?

10/15/2019

Please remember to light your candle in memory of all our IP angels. 7pm your time is our normal, but please feel free to do so any time convenient for you. Share a picture here... let's fill our page with the light of love!

10/15/2019

Today is a day that those impacted with Incontentia Pigmenti remember all the little ones we have had to say good bye to far too early... most without even getting to hold in our arms.
Incontinentia Pigmenti is considered male fatal meaning that very seldom does a boy survive to birth with this disorder. So most moms that have IP will suffer many miscarriages throughout their life. This disorder also can impact so many systems in the body in extremes that there are times that even our little girls are in our arms for a short time.
So.... tonight... for the mommies and daddies that have said good bye far to early to their angels due to IP, for our girls who will more than likely have the heartbreak of loosing a little one.... our prayers are with you... today and always.

10/14/2019

TUESDAY OCTOBER 15 7pm

Tomorrow at 7pm (your time), please join us in lighting a candle in remembrance of all those IP has taken from us too soon.

You are welcome to share other pictures, prayers, images as well. Please feel free to participate at any time tomorrow if 7pm is not a good time.

Our page will be filled with candles of love throughout the entire day and evening tomorrow due to our time zones.