Meet our 2017 Season's Greeting Art Contest Winner!
Meet our 2017 Season's Greeting Art Contest Winner!

December 12, 2017

Meet our 2017 Season's Greeting Art Contest Winner! Continue Reading…

FIRST Board Member, Tracie Pretak Builds Dreams One Note at Time
FIRST Board Member, Tracie Pretak Builds Dreams One Note at Time

November 10, 2017

FIRST Board Member, Tracie Pretak Builds Dreams One Note at Time Continue Reading…

New Genetic Causes of Ichthyoses Likely to Emerge
New Genetic Causes of Ichthyoses Likely to Emerge

November 01, 2017

Dr. Keith Choate discusses the importance of genetic research and updates from the National Registry for Ichthyosis and Related Skin Types. Continue Reading…

Jane & Henry Bukaty Skin Care Fund Applications are now being accepted
Jane & Henry Bukaty Skin Care Fund Applications are now being accepted

November 01, 2017

November 1, 2017 - FIRST members can apply for funding for skin care supplies, treatments, and/or cooling devices. Continue Reading…

Registration Now Open for 2018 National Conference - Nashville!
Registration Now Open for 2018 National Conference - Nashville!

October 02, 2017

Registration is now open! Don't miss early-bird discount rates for 2018 National Conference - Nashville. Continue Reading…

College Survival Tips for Students Affected with Ichthyosis
College Survival Tips for Students Affected with Ichthyosis

August 24, 2017

Discover FIRST's College Survival Guide for those affected with ichthyosis. Continue Reading…

FIRST Launches New Parent Resources & Information
FIRST Launches New Parent Resources & Information

July 24, 2017

FIRST Launches Updated New Parent Resources & Information Continue Reading…

The National Registry for Ichthyosis Plays a Key Role in Development of Severity Index
The National Registry for Ichthyosis Plays a Key Role in Development of Severity Index

July 11, 2017

The National Registry for Ichthyosis and Related Skin Types Plays a Key Role in Development of Severity Index Continue Reading…

FIRST Announces Leadership Change
FIRST Announces Leadership Change

June 21, 2017

FIRST Announces Leadership Change Continue Reading…

National Registry for Ichthyosis and Related Skin Types Plays Key Role in Yale Genetic Discovery
National Registry for Ichthyosis and Related Skin Types Plays Key Role in Yale Genetic Discovery

June 02, 2017

National Registry for Ichthyosis and Related Skin Types Plays Key Role in Yale Genetic Discovery. Continue Reading…

IAM News from PA State Representative Thomas Murt
IAM News from PA State Representative Thomas Murt

May 16, 2017

PA State Representative Recognizes May as Ichthyosis Awareness Month Continue Reading…

Urgent Message from the National Health Council
Urgent Message from the National Health Council

April 27, 2017

Urgent Message from the National Health Council Regarding American Health Care Act (AHCA) Continue Reading…

Tapping Local Media for Grassroots Events
Tapping Local Media for Grassroots Events

April 04, 2017

Many members of the FIRST community are enthusiastically raising awareness by planning unique and exciting events throughout the entire month. Continue Reading…

FIRST Flashcard Word of the Month: Desquamation
FIRST Flashcard Word of the Month: Desquamation

March 29, 2017

FIRST Flashcard Word of the Month - What is Desquamation? Learn about ichthyosis one word at a time. Continue Reading…

Doctors Collaborate on Groundbreaking Ear Reconstruction for Patient with Harlequin Ichthyosis
Doctors Collaborate on Groundbreaking Ear Reconstruction for Patient with Harlequin Ichthyosis

March 02, 2017

Doctors Collaborate on Groundbreaking Ear Reconstruction for Patient with Harlequin Ichthyosis Continue Reading…

NORD Launches Do Your Share Pubic Awareness Campaign on Rare Disease Day
NORD Launches Do Your Share Pubic Awareness Campaign on Rare Disease Day

February 28, 2017

NORD Unveils “Do Your Share for Rare,” Public Awareness Campaign Featuring FIRST Members Continue Reading…

Meet the Extraordinary Family of The Girl Behind the Face
Meet the Extraordinary Family of The Girl Behind the Face

February 13, 2017

FIRST is delighted to introduce the Thomas family, an extraordinary family from Hong Kong who are challenging attitudes, raising awareness, and inspiring women and men the world over. Continue Reading…

Introducing, FIRST Flashcards! Learn about ichthyosis, one word at a time.
Introducing, FIRST Flashcards! Learn about ichthyosis, one word at a time.

January 25, 2017

Are you feeling a little perplexed by all the medical jargon surrounding your condition? You're not alone. Continue Reading…

Special Announcement - 20th Biennial FIRST National Conference 2018 in Nashville, TN!
Special Announcement - 20th Biennial FIRST National Conference 2018 in Nashville, TN!

January 19, 2017

Music City...here we come! 20th Biennial National Conference 2018 - Nashville, TN June 29 - July 1, 2018 Nashville Airport Marriott (Photo courtesy of Nashville Visitors & Convention Corporation) Continue Reading…

In the NEWS: President Signs 21st Century Cures Medical Innovation Bill Into Law
In the NEWS: President Signs 21st Century Cures Medical Innovation Bill Into Law

December 15, 2016

On December 13, 2016 President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation and the rare disease community. Continue Reading…

FIRST 2017 Research Grant Awarded to Dr. Christopher Bunick, Yale University
FIRST 2017 Research Grant Awarded to Dr. Christopher Bunick, Yale University

December 07, 2016

On September 25, 2016, the FIRST Board of Directors approved funding of Dr. Christopher Bunick of Yale University for his work in determining structural mechanisms of ichthyosis-causing mutations. Continue Reading…

Results Published for Online X-Linked Personality Survey
Results Published for Online X-Linked Personality Survey

November 29, 2016

On October 6, 2016 results were published in the PLOS journal regarding a recent X-Linked personality survey. Continue Reading…

FIRST member Anne Kaier published in the New York Times
FIRST member Anne Kaier published in the New York Times

September 01, 2016

FIRST member Anne Kaier published in the New York Times! Read what this sensational writer has to say about living with ichthyosis. Continue Reading…

Newborn Study at Yale University
Newborn Study at Yale University

July 30, 2016

July 30, 2016 - A study of newborns with ichthyosis. Continue Reading…

From Difficult Case to New Syndrome
From Difficult Case to New Syndrome

February 23, 2016

When Keith Choate, MD, PhD speaks about his research program to identify and understand new genetic causes of ichthyosis, he always begins by discussing the importance of genetics Continue Reading…

Ichthyosis Clinic at Massachusetts General Now Open
Ichthyosis Clinic at Massachusetts General Now Open

December 10, 2015

Affected patients seeking support and assistance can schedule an appointment on Tuesday afternoons between the hours of 1pm to 5pm. Continue Reading…

FIRST Member hosts online sales to benefit the Foundation
FIRST Member hosts online sales to benefit the Foundation

October 22, 2015

October 22, 2015 - Grandmother of affected boy operates a shop on etsy.com. Continue Reading…

FIRST Offers Tips for Skin Care During Winter Months
FIRST Offers Tips for Skin Care During Winter Months

October 14, 2015

Living with ichthyosis can be difficult for those affected, but even more so in the winter months. Continue Reading…

Blood Sample Collection of Individuals with Ichthyosis
Blood Sample Collection of Individuals with Ichthyosis

July 30, 2015

As part of a clinical research study, we are collecting blood samples from volunteers who have been diagnosed with ichthyosis. Continue Reading…

Aldeyra Therapeutics Opens Phase II of Clinical Trial
Aldeyra Therapeutics Opens Phase II of Clinical Trial

July 13, 2015

July 13, 2015 - The study is being conducted at the University of Nebraska Medical Center with FIRST MSAB member, Dr. Bill Rizzo as the Principle Investigator. Continue Reading…

The Facts About Ichthyosis
The Facts About Ichthyosis

April 29, 2015

FIRST created information dispelling the myths associated with ichthyosis for members of the media as a quick reference. Our friends and members can also make use of this. Continue Reading…

Boston Children's Hospital Conducting a Harlequin Ichthyosis Study
Boston Children's Hospital Conducting a Harlequin Ichthyosis Study

February 09, 2015

February 9, 2015 - Boston Children's Hospital is conducting a medical records study of people with harlequin ichthyosis. Continue Reading…

Latest Research on Treatment for Infection Related to Keratitis-Ichthyosis-Deafness (KID syndrome)
Latest Research on Treatment for Infection Related to Keratitis-Ichthyosis-Deafness (KID syndrome)

January 20, 2015

January 20, 2015 - KID syndrome is a rare hereditary cornification disorder resulting from mutations in connexin 26, a protein important for intercellular communication. Continue Reading…

FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK
FIRST Research Grant Awarded to Dr. Ryan O’Shaughnessy, UCL Institute of Child Health, London, UK

December 16, 2014

December 16, 2014 - The research specifically focuses on understanding the mechanisms that cause scaling, and subsequently increasing the options for treatment. Continue Reading…

The Latest Update from the Gene Discovery Program at Yale…
The Latest Update from the Gene Discovery Program at Yale…

December 08, 2014

December 8, 20014 - Thanks to advances in next-gen sequencing, a number of studies in recent years are beginning to unravel the role of de novo mutations in human disease. Continue Reading…

Doctors Connect Online to Diagnose and Advise
Doctors Connect Online to Diagnose and Advise

November 13, 2014

November 2014 - Telehealth is the delivery of health care using technology to link patients and care providers in separate locations. It's a promising way to deliver care where access is a problem. Continue Reading…

PeDRA is Growing Strong
PeDRA is Growing Strong

November 13, 2014

November 13, 2014 - It is the PeDRA mission to pursue groundbreaking research so that we might discover underlying causes, better treatments, and one day, cures. Continue Reading…

The Benefits of Genetic Testing
The Benefits of Genetic Testing

September 17, 2014

September 17, 2014 - genetic testing is a means of looking at a person’s DNA to identify the specific mutation that causes their condition Continue Reading…

News from Galderma Regarding Research Study
News from Galderma Regarding Research Study

July 08, 2014

July 8, 2014 - An update to their research. Continue Reading…

Announcement from GeneDX
Announcement from GeneDX

June 05, 2014

June 5, 2014 - Congenital ichthyosis and related disorders of cornification of the skin are a clinically and genetically very heterogeneous group of genetic disorders. Continue Reading…

FIRST Member Featured on WebMD
FIRST Member Featured on WebMD

May 06, 2014

May 6, 2014 - Courtney Westlake blogs about surviving and thriving. Continue Reading…

Survey about therapy uncertainties in congenital ichthyosis
Survey about therapy uncertainties in congenital ichthyosis

April 22, 2014

April 22, 2014 - Dr. Angela Hernández Martín from Madrid is asking for your help with a future study. The aim of the study is to identify existing major uncertainties in the treatment of ichthyosis. Continue Reading…

Ear Related Symptoms Survey Results Published
Ear Related Symptoms Survey Results Published

March 24, 2014

March 23, 2014 - During 2012-2013, the doctors at Boston Children’s Hospital, conducted a pilot survey study to obtain information about ichthyosis and its ear-related symptoms. Continue Reading…

The National Health Council (NHC) Launches New Tools for Navigating the Health Care Marketplace
The National Health Council (NHC) Launches New Tools for Navigating the Health Care Marketplace

January 28, 2014

January 30, 2014 - Choosing a healthcare plan in the new marketplace can be tricky. However, finding a plan that is best suited for your health care needs is key to a healthy future. Continue Reading…

Change How You See. See How You Change.
Change How You See. See How You Change.

January 27, 2014

January 27, 2014 - In his former career, Rick took photographs of what were considered “the world’s most beautiful people;” chic, striking images used in publications all over the world. Continue Reading…

A Passion for Patients, FIRST Goes to Yale
A Passion for Patients, FIRST Goes to Yale

December 19, 2013

December 19, 2013 - FIRST is closely affiliated with a team of unique medical professionals, from universities and hospitals around the world, who are dedicated to the research of ichthyosis. Continue Reading…

Galderma Publishes a Study of Lamellar Ichthyosis
Galderma Publishes a Study of Lamellar Ichthyosis

December 09, 2013

December 9, 2013 - FIRST is excited to share that the enthusiasm of our participant members was overwhelming and the outcome produced a unique overview of life for individuals with lamellar ichthyosis Continue Reading…

FIRST earns National Health Council Standards of Excellence Certificate
FIRST earns National Health Council Standards of Excellence Certificate

November 27, 2013

November 27, 2013 - The certificate was granted upon a review of FIRST’s adherence to the 43 standards of excellence adopted by the NHC’s board of directors. Continue Reading…

Topical Tazarotene for the Treatment of Ectropion in Ichthyosis
Topical Tazarotene for the Treatment of Ectropion in Ichthyosis

November 07, 2013

November 7, 2013 - Many individuals affected with ichthyosis cite ectropion – an abnormal eversion of eyelids – as one of the most cosmetically displeasing aspects of their skin disorder. Continue Reading…

It's Time to Do Something!
It's Time to Do Something!

October 15, 2013

October 15, 2013 - The recent government shut-down has added yet another layer of challenges to the rare disease research community. Continue Reading…

Bathing Completes the Shedding Process…naturally.
Bathing Completes the Shedding Process…naturally.

June 10, 2013

June 10, 2013 - Bathing may be even more important to the shedding process, than previously considered. Continue Reading…

Research on “Gene Therapy Topical Ointment” Continues
Research on “Gene Therapy Topical Ointment” Continues

June 06, 2013

June 6, 2013 - Groundbreaking siRNA research, led by Dr. Amy Paller, has inspired new hope for silencing the underlying mutation of EI its changes to the skin surface. Continue Reading…

Never Letting Go
Never Letting Go

April 26, 2013

April 26, 2013 - “You cannot judge someone by what has happened to them or what they were born with”, he said, “the second I met her, I wasn’t letting go.” Continue Reading…

Navigating the School System
Navigating the School System

March 11, 2013

March 11, 2013 - I have been a teacher for 25 years, so it shouldn't have been a big deal when my son entered kindergarten, but it was. Continue Reading…

What is Your Itch Tip?
What is Your Itch Tip?

February 18, 2013

February 18, 2013 - Members and friends are always seeking tips for managing their skin. With the winter weather, skin becomes even more itchy. Continue Reading…

FIRST has the answers to your questions!
FIRST has the answers to your questions!

February 11, 2013

February 11, 2013 - There are so many questions about ichthyosis and its affects. FIRST answers many of your questions and those of your family and friends. Continue Reading…

Skin Disease Research is Alive and Thriving at NIAMS

February 07, 2013

February 7, 2013 - My role on the Council is to represent patients when discussing programs, projects, and future initiatives spearheaded by NIAMS. Continue Reading…

Photo Contest Leads to Awareness
Photo Contest Leads to Awareness

January 17, 2013

January 18, 2013 - I never considered that this would be an opportunity for awareness of ichthyosis. Continue Reading…

Ichthyosis and Dogs
Ichthyosis and Dogs

January 14, 2013

January 14, 2013 - Throughout the year, FIRST receives a number of emails from dog owners trying to find help for their dog affected with ichthyosis. Continue Reading…

A Dream Fulfilled with Hard Work
A Dream Fulfilled with Hard Work

January 10, 2013

January 10, 2013 - Valerie is in inspiration to everyone. With hard work, determination, and a positive attitude, you can accomplish whatever you put your mind to. Continue Reading…

What is the connection between essential fatty acids and ichthyosis?
What is the connection between essential fatty acids and ichthyosis?

December 03, 2012

December 3, 2012 - This work explains why, in healthy skin, the essential fatty acid cannot be replaced by other lipids and why its oxidation is important in maintaining a normal skin barrier. Continue Reading…

Planning a fundraiser can be very rewarding
Planning a fundraiser can be very rewarding

November 29, 2012

November 29, 2012 - FIRST will work with you every step of the way, from providing you with awareness materials, to helping to publicize your event, to even suggesting ideas for the event itself. Continue Reading…

Tips for Bullying Prevention
Tips for Bullying Prevention

October 25, 2012

October 25, 2012 - Navigating the social situations that present themselves with children at school can be tricky even on a good day. Continue Reading…

Nutrition and Ichthyosis
Nutrition and Ichthyosis

September 18, 2012

Because the skin is the largest organ of the body and because it has a very large surface area in contact with the environment, what happens to the skin has a significant impact on the whole body. Continue Reading…

Treating Cuts & Scrapes
Treating Cuts & Scrapes

August 13, 2012

Like any child, those with ichthyosis are likely to get occasional cuts and scrapes. Continue Reading…

Share This Page:

Search