February 26, 2021

Jordan discusses what it was like to be pregnant while also having ichthyosis. Continue Reading…

February 25, 2021

Looking back to Cash's birth story on Rare Disease Day Continue Reading…

February 25, 2021

Overheating and extremely dry skin Continue Reading…

February 24, 2021

Morgan Villano will discuss her daughter's rare condition, Lamellar Ichthyosis Continue Reading…

February 17, 2021

Tips from FIRST Members Continue Reading…

February 16, 2021

Carlie will get to represent East Tennessee at the internationals in Florida Continue Reading…

February 15, 2021

We have generated hiPSCs from patients with congenital ichthyosis, either non-syndromic autosomal recessive congenital ichthyosis (ARCI) or the ichthyosis syndrome trichothiodystrophy Continue Reading…

February 10, 2021

Sewell was arrested for the crime in late 2019 following a lengthy investigation by the New York State Police and the Ulster County Sherriff’s Office Continue Reading…

February 09, 2021

Gene therapies prevent, treat, and cure human diseases.Application of gene therapies for skin diseases received little attention so far, despite easy accessibility of skin and the urgent medical need. Continue Reading…

February 09, 2021

Drug discovery and biologics manufacturing is deeply technical, where one concept can snowball into various other areas of science and technology. Continue Reading…

February 03, 2021

Rare Disease Day is on February 28, 2021. What will you do? Continue Reading…

February 01, 2021

An opportunity for students affected with a form of ichthyosis or a related skin type to achieve their highest educational potential. Applications are now available. Continue Reading…

February 01, 2021

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…

January 26, 2021

Webinar hosted by NeedyMeds Continue Reading…

January 26, 2021

U.S based medical students with rare disease patients and families to help foster meaningful doctor-patient relationships, Continue Reading…

January 25, 2021

The clinical research community has been disrupted in a number of ways due to COVID-19 and sparked a spirit of collaboration and innovation. Continue Reading…

January 20, 2021

Getting good quality sleep, exercising, and eating more raw fruits and vegetables predicts better mental health and well-being in young adults, a study has found. Continue Reading…

January 19, 2021

The following links and resources may be useful to patients and families looking for medication assistance and financial information. Continue Reading…

January 18, 2021

Skip the products and supplements and focus on your diet to make sure your skin feels free, clear, and glowing. Continue Reading…

January 14, 2021

The elderly and people with chronic health conditions are vulnerable to loneliness, which can harm emotional and physical health. Learn how to loosen its hold. Continue Reading…

January 12, 2021

X-linked ichthyosis has a incidence of 1:2000-6000 male births and has no racial predisposition. It may be apparent at birth or in early infancy, but may not become evident until the child grows older Continue Reading…

December 17, 2020

Genetic Studies Illuminate Neuronal Chemical’s Role in Pain and Itch Continue Reading…

December 17, 2020

Each day for at least one week, write down three things that went well for you today, and provide an explanation for why they went well. Continue Reading…

December 15, 2020

Mwanzi isn’t cursed, he suffers from Keratosis follicularis, also known as Darier disease. It is a rare, genetic disorder where the skin thickens and forms a rough crust on the surface. Continue Reading…

December 15, 2020

Patients with rare diseases are challenged when it comes to finding physicians with expertise in their condition. Continue Reading…

December 14, 2020

Now Jefferson researchers find that the skin can also foretell issues unrelated to the protective barrier. Continue Reading…

December 09, 2020

It could provide new ways to diagnose breathing problems such as sleep apnoea and introduce new clinical strategies for Cx26 patients with mutations that affect CO2 to improve their quality of life Continue Reading…

December 08, 2020

Scalp care is often requested. Here are both a FIRST Resource Sheet and Scalp care tips from FIRST Adult members. Continue Reading…

December 03, 2020

Dr. Downs highlighted that the characteristics of clinical trial populations are poorly concordant with the US population, with respect to sex, race, age, and ethnicity. Continue Reading…

November 19, 2020

Young champions Changing Faces, are calling on parents, teachers and other young people to celebrate difference and be a better ally to anyone experiencing appearance-related bullying. Continue Reading…

November 16, 2020

 Can epidermal growth factor receptor transactivation be targeted with erlotinib Continue Reading…

November 11, 2020

Recently one of our moms asked about her teen daughter. She is 16 and stopped using greasy emollients because of damage to her clothes and it made her hair greasy. Now her skin and scalp are dry. Continue Reading…

November 05, 2020

Research presented at EADV’s 29th Congress shows hope that a form of vitamin B3 could protect skin cells from the effects of ultraviolet exposure: the main risk factor for non-melanoma skin cancers. Continue Reading…

November 03, 2020

“There is no conclusive evidence that either weather or climate (long-term averages) have a strong influence on transmission”…of COVID-19 but theyare related in a number of ways. Continue Reading…

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…

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…

October 26, 2020

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

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…

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…

October 13, 2020

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

October 08, 2020

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

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…

September 22, 2020

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

September 14, 2020

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

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…

August 19, 2020

FIRST is now fully remote. Continue Reading…

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…

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…

July 29, 2020

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

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…

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…

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…

July 13, 2020

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

July 10, 2020

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

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…

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…

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…

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…

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…

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…

June 15, 2020

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

June 12, 2020

FIRST physicians contributed to this research article. Continue Reading…

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…

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…

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…

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…

May 14, 2020

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

May 13, 2020

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

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…

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…

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…

April 16, 2020

Camp Wonder Summer Camp Announcement Continue Reading…

April 03, 2020

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

April 02, 2020

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

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

February 11, 2020

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

January 23, 2020

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

January 06, 2020

Find out the top 5! Continue Reading…

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…

December 06, 2019

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

November 18, 2019

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

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…

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…

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…

March 03, 2019

FIRST Responds to American Airlines’ Discrimination of Passengers Continue Reading…

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…

July 11, 2017

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

June 02, 2017

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

March 02, 2017

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

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…

November 29, 2016

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

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…

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…

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…

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…

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…

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…

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…