Cyberbullying During COVID-19
Cyberbullying During COVID-19

October 30, 2020

With children and teens spending more time online for school, fun and socialization, there's an increased risk of cyberbullying. Continue Reading…

Tips, Tricks & Advice from FIRST Adults
Tips, Tricks & Advice from FIRST Adults

October 29, 2020

“What do you wish you had known about ichthyosis when you were younger?" FIRST adults jumped at the chance to pass along their wisdom. Continue Reading…

FIRST Quarterly Literature Review
FIRST Quarterly Literature Review

October 26, 2020

FIRST's Medical & Scientific Advisory Board members take turns in reviewing ichthyosis literature Continue Reading…

Why I hide on Halloween, A Journey of Living with a Visible Difference
Why I hide on Halloween, A Journey of Living with a Visible Difference

October 21, 2020

FIRST Member Francine Mondi explains why she hides on Halloween and reminds us that commenting on a stranger’s appearance is not acceptable Continue Reading…

Rare Caregiver Respite Program
Rare Caregiver Respite Program

October 20, 2020

This first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or signicant other) of a child or adult diagnosed with a rare disorder. Continue Reading…

PeDRA - See How Patients Can Help to Fuel Innovation and Participate in "The Big Study"
PeDRA - See How Patients Can Help to Fuel Innovation and Participate in "The Big Study"

October 13, 2020

See how you can fuel innovation and participate in The Big Study! Continue Reading…

The Human Genome Project turns the big 3-0!
The Human Genome Project turns the big 3-0!

October 08, 2020

Celebrating 30 years of genomics that has transformed our understanding of life and improved health. Continue Reading…

What Parents Should Know About Bullying
What Parents Should Know About Bullying

September 29, 2020

Bullying-at first glance, many people might think this behavior is easy to define. Parents need to know that bullying behavior can be much more complex and varied than the stereotype. Continue Reading…

Free LuLaRoe Leggings
Free LuLaRoe Leggings

September 22, 2020

HQDonations is offering free leggings to FIRST members in the United States Continue Reading…

Covid-19 and Readjusting Clinical Trials
Covid-19 and Readjusting Clinical Trials

September 14, 2020

The COVID-19 pandemic has created massive disruptions to clinical trial research across the world. Continue Reading…

Covid Toes, Rashes: How the Corona Virus Can Affect Your Skin
Covid Toes, Rashes: How the Corona Virus Can Affect Your Skin

August 24, 2020

While less common, the coronavirus can affect your skin. For some people, this may be the only sign of a coronavirus infection. Continue Reading…

FIRST has a new address!
FIRST has a new address!

August 19, 2020

FIRST is now fully remote. Continue Reading…

Insight from FIRST's CEO Chris Boynton
Insight from FIRST's CEO Chris Boynton

August 14, 2020

"I am excited about the future!...Together we will grow and evolve FIRST into an even more successful mission-driven organization while maintaining and improving the culture that truly sets us apart." Continue Reading…

3D Model of Harlequin Ichthyosis Reveals Inflammatory Therapeutic Targets
3D Model of Harlequin Ichthyosis Reveals Inflammatory Therapeutic Targets

August 12, 2020

Overall, these findings reveal the potential for NOS2 inhibitors or JAK/STAT inhibitors, targeting the pathway upstream of NOS2, as HI therapeutic agents. Continue Reading…

Diya & Aliya's Friends Skin Care Fund is now accepting applications!
Diya & Aliya's Friends Skin Care Fund is now accepting applications!

August 01, 2020

The fight against ichthyosis is not only medical but also financial. Daily treatment routines can be complicated by the ongoing costs of medical supplies and other aids. Continue Reading…

From the Patient's Perspective
From the Patient's Perspective

July 29, 2020

This article is from the Journal of Dermatology for Physician Assistants (JDPA). Continue Reading…

The Real Work of Parenting a Rare Girl
The Real Work of Parenting a Rare Girl

July 27, 2020

But this is where my fantasy stopped. And so the real work of parenting began: loving my daughter, as she was. And rejecting the false virtue of “normal.” Continue Reading…

What Patients Need Right Now
What Patients Need Right Now

July 23, 2020

In the face of massive patient need, there’s plenty pharma can do to help. The crisis is also an opportunity for it to transform the way it works with patients. Continue Reading…

Northwestern Ichthyosis Surveys for Adults, Parents and Children
Northwestern Ichthyosis Surveys for Adults, Parents and Children

July 21, 2020

We invite you to participate in our research studies on ichthyosis. These studies involve completion of online surveys and more information can be found below. Continue Reading…

Introducing the Disorder Channel
Introducing the Disorder Channel

July 13, 2020

The rare disease channel. Short films to educate about rare disease. Continue Reading…

Bailey Pretak is Interviewed on the Dr. Oz Show
Bailey Pretak is Interviewed on the Dr. Oz Show

July 10, 2020

Bailey Pretak appeared on the Doctor Oz show to discuss her Lamellar Ichthyosis Continue Reading…

Finding Ithaca after our 98 Year Diagnostic Odyssey
Finding Ithaca after our 98 Year Diagnostic Odyssey

July 10, 2020

With the knowledge of our genetics comes new aspirations; to support patients with, to learn about, to educate on, and to eventually … cure … ASPRV1 related ichthyosis. Continue Reading…

Skincare Science and the Microbiome
Skincare Science and the Microbiome

July 06, 2020

Clinical studies associate skin conditions ranging from accelerated aging and skin sensitivity to atopic dermatitis and even dandruff with some level of microbial “dysbiosis.” Continue Reading…

Say Yes to Sun Protection
Say Yes to Sun Protection

June 30, 2020

Reduce your risk of skin cancer by protecting your skin from the sun's harmvul UV rays. Follow the tips in the infographic below and #PracticeSafeSun every time you are outdoors. Continue Reading…

LGBTQ cyberbullying: A guide for parents and educators
LGBTQ cyberbullying: A guide for parents and educators

June 29, 2020

LGBTQ youth are at higher risk of being bullied online. We’ll discuss the problem, take a look at the statistics and offer advice for parents and educators to help LGBTQ cyberbullying victims. Continue Reading…

Medical Scientific Advisory Board (MSAB) of the Foundation for Ichthyosis and Related Skin Types (FIRST)-Literature Review
Medical Scientific Advisory Board (MSAB) of the Foundation for Ichthyosis and Related Skin Types (FIRST)-Literature Review

June 25, 2020

First installment of a quarterly literature review for FIRST members. It was written by UTA dermatology resident, Emily Henkel, M.D., with editorial review/commentary from members of FIRST's MSAB. Continue Reading…

The Winners of Our 7th Annual New York Times Student Editorial Contest
The Winners of Our 7th Annual New York Times Student Editorial Contest

June 22, 2020

FIRST member Aliya Shahnaz Kraybill entered the New York Times Student Editorial Contest and made it to the Finalist list. Continue Reading…

FIRST Announces 2020 UFIRST Scholarship Recipients
FIRST Announces 2020 UFIRST Scholarship Recipients

June 15, 2020

These 10 students received a total of $11,500 in awards for their post-secondary education Continue Reading…

Mutations in ASPRV1 Cause Dominantly Inherited Ichthyosis
Mutations in ASPRV1 Cause Dominantly Inherited Ichthyosis

June 12, 2020

FIRST physicians contributed to this research article. Continue Reading…

Extraordinary Senior: Brian Merritt shoots for success
Extraordinary Senior: Brian Merritt shoots for success

June 12, 2020

Born with harlequin ichthyosis, a severe genetic disorder resulting in thickened skin over nearly the entire body, the resilient 18-year-old speaks with authority. Continue Reading…

FIRST Statement on Recent Events
FIRST Statement on Recent Events

June 03, 2020

FIRST unequivocally stands in solidarity with those protesting the murders of George Floyd and the many others who have lost their life to racist violence. Continue Reading…

Watch or Rewatch the IAM20 Interviews
Watch or Rewatch the IAM20 Interviews

May 27, 2020

For Ichthyosis Awareness Month 2020, FIRST hosted four Member Monday Livestream Interviews with FIRST members. Watch for ichthyosis support, successes, overcoming adversity and inspiration! Continue Reading…

The Impact on Mental Health During a Pandemic
The Impact on Mental Health During a Pandemic

May 22, 2020

Mental Health Awareness month raises awareness and educates the public about mental health. The goal is to fight stigma, provide support, educate the public, encourage research, and advocate. Continue Reading…

Positive Exposure Connects with Bailey Pretak
Positive Exposure Connects with Bailey Pretak

May 14, 2020

During Ichthyosis Awareness Month, Rick Guidotti interviewed FIRST member Bailey Pretak live on Facebook Continue Reading…

Timber Pharmaceuticals Recognizes Ichthyosis Awareness Month
Timber Pharmaceuticals Recognizes Ichthyosis Awareness Month

May 13, 2020

Timber Pharmaceuticals announced its support for Ichthyosis Awareness Month. Continue Reading…

Five common skin manifestations of COVID-19 identified
Five common skin manifestations of COVID-19 identified

April 30, 2020

5 common skin manifestations of COVID-19 have been identified by Spanish dermatologistsaccording to new research published in the British Journal of Dermatology. Continue Reading…

Ichthyosis Awareness Month Gear Available!
Ichthyosis Awareness Month Gear Available!

April 28, 2020

This year we are offering several different sizes, colors and types of gear for Ichthyosis Awareness Month. This sale ends on May 3rd so deliveries can be completed in May. Continue Reading…

The Evolving Role of Patient Advocates
The Evolving Role of Patient Advocates

April 17, 2020

Patient advocacy groups have long had relationships with pharma, and now, individual patients are also sharing their voices and their power. Continue Reading…

Health Impacts of Wood Smoke and PM2.5 Pollution on Your Skin
Health Impacts of Wood Smoke and PM2.5 Pollution on Your Skin

April 16, 2020

Eliminating wood burning fireplaces would be better for our families, our neighbors and the planet. And better for our skin. Continue Reading…

Summer Camp Announcement!
Summer Camp Announcement!

April 16, 2020

Camp Wonder Summer Camp Announcement Continue Reading…

Care for your Corona Virus Anxiety
Care for your Corona Virus Anxiety

April 03, 2020

This site provides resources for anxiety and your mental health in a global climate of uncertainty. Continue Reading…

A Study of Gene Mutations and How They Relate to the Different Types of Ichthyosis
A Study of Gene Mutations and How They Relate to the Different Types of Ichthyosis

April 02, 2020

This large study provides a lot of new information about ichthyosis, but genotype only partly predicts phenotype. Continue Reading…

Lamellar Ichthyosis (LI) - Market Insights, Epidemiology and Market Forecast - 2030
Lamellar Ichthyosis (LI) - Market Insights, Epidemiology and Market Forecast - 2030

March 25, 2020

The Lamellar Ichthyosis market report provides current treatment practices, emerging drugs, LI market share of the individual therapies, current and forecasted Lamellar Ichthyosis market. Continue Reading…

CBD Information from FIRST's Medical & Scientific Advisory Board
CBD Information from FIRST's Medical & Scientific Advisory Board

March 24, 2020

We asked FIRST's Medical & Scientific Advisory Board what members with ichthyosis and related skin types need to know about CBD. Continue Reading…

Ichthyosis & COVID-19
Ichthyosis & COVID-19

March 12, 2020

In general, people with ichthyosis do not face greater risks of complications when dealing with viral infections like flu, and that is likely to be true with COVID-19. Continue Reading…

Genotype–phenotype correlation in a large English cohort of patients with autosomal recessive ichthyosis
Genotype–phenotype correlation in a large English cohort of patients with autosomal recessive ichthyosis

March 09, 2020

These data refine genotype–phenotype correlation for recessive forms of ichthyosis in England, demonstrating the spectrum of disease features and comorbidities, as well as the gene pathologies. Continue Reading…

Medical and neurobehavioural phenotypes in carriers of X-linked ichthyosis
Medical and neurobehavioural phenotypes in carriers of X-linked ichthyosis

March 09, 2020

Adult males with XLI disease-causing deletions are apparently at increased risk of cardiac arrhythmias and self-reported mood problems. and reinforce the need for multidisciplinary medical care. Continue Reading…

Handwashing and Hand Sanitizer Use
Handwashing and Hand Sanitizer Use

March 05, 2020

Germs are everywhere and everything we touch could end up making us sick. Learn when to use soap and water versus hand sanitizer. Important information from the CDC. Continue Reading…

How to Create a Facebook Fundraiser for your Birthday or any Day!
How to Create a Facebook Fundraiser for your Birthday or any Day!

February 27, 2020

One way to "give back" to FIRST is to set up a Facebook fundraiser. In just six easy steps, you will be off and running your very own Facebook fundraiser for FIRST! Continue Reading…

Tips for Finding Financial Aid
Tips for Finding Financial Aid

February 25, 2020

The cost of care for rare medical conditions can place a significant financial burden on families. The following resources may help you find the financial support you need. Continue Reading…

Edmonds girl, 4, has beauty that’s ‘more than skin deep’
Edmonds girl, 4, has beauty that’s ‘more than skin deep’

February 17, 2020

Harper Foy was born with harlequin ichthyosis, a skin condition that’s 1 in 500,000. She’s a fighter. Continue Reading…

Patients with Ichthyosis More Likely to Have Depression and Anxiety
Patients with Ichthyosis More Likely to Have Depression and Anxiety

February 13, 2020

Many ichthyosis patients have undetected psychiatric distress. They face harassment, discrimination and uncomfortable skin symptoms often only relieved by time-consuming treatments. Continue Reading…

Learn About Participating in Scientific Research
Learn About Participating in Scientific Research

February 13, 2020

The scientific landscape for ichthyosis research has been changing. Here are resources for the public to learn about participating in research and making informed decisions. Continue Reading…

Hokkaido University scientists are getting closer to understanding how a rare hereditary disease impairs the skin's barrier function
Hokkaido University scientists are getting closer to understanding how a rare hereditary disease impairs the skin's barrier function

February 13, 2020

Hokkaido University scientists are getting closer to understanding how a rare hereditary disease impairs the skin's barrier function, which determines how well the skin is protected. Continue Reading…

Building Capacity for Patient Centered Outcomes Research in Pediatric Dermatology
Building Capacity for Patient Centered Outcomes Research in Pediatric Dermatology

February 11, 2020

Patient Centered Outcomes are the most important driver in Pediatric Dermatology Research. Continue Reading…

Comfortable in her own skin: Young model brings awareness to rare skin condition
Comfortable in her own skin: Young model brings awareness to rare skin condition

January 23, 2020

Comfortable in her own skin: Young model brings awareness to rare skin condition Continue Reading…

FIRST Members Receive Supermodel Treatment
FIRST Members Receive Supermodel Treatment

December 18, 2019

Fourteen pediatric dermatology patients from M Health Fairview hope their photographs change the way we see those who are different. Continue Reading…

The Skin We Wear Video Premieres
The Skin We Wear Video Premieres

December 06, 2019

This beautiful documentary was put together including 3 of our wonderful FIRST families Continue Reading…

Recent Cyberbullying Arrests Related to Ichthyosis
Recent Cyberbullying Arrests Related to Ichthyosis

November 18, 2019

FIRST advocates for you and is here to assist you. Continue Reading…

MyPaTH Story Booth Opportunity
MyPaTH Story Booth Opportunity

May 07, 2019

The PaTH Clinical Data Research Network is conducting a research study and wants to know about patients’ experiences with health and illness. Continue Reading…

Building a Role of Grandparents in Children's Lives
Building a Role of Grandparents in Children's Lives

April 03, 2019

We understand every family dynamic is different, but we have heard from our grandparents that they would like to know how to be involved in their grandchildren’s lives. Continue Reading…

FIRST Member Shares His Story After American Airlines Incident
FIRST Member Shares His Story After American Airlines Incident

March 08, 2019

FIRST member Matt Alba, a reporter with PHL17, visited the national office to talk with Moureen Wenik, FIRST Executive Director about the recent incident with American Airlines. Continue Reading…

FIRST Response to American Airlines' Discrimination of Passengers
FIRST Response to American Airlines' Discrimination of Passengers

March 03, 2019

FIRST Responds to American Airlines’ Discrimination of Passengers 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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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