Q & A - December 1st E-News
Q & A - December 1st E-News

November 23, 2021

One thing you wish you knew about ichthyosis from the very beginning? Continue Reading…

New App to Measure Quality of Life for People with Skin Conditions
New App to Measure Quality of Life for People with Skin Conditions

November 18, 2021

The paper-only tool, Dermatology Life Quality Index, has been transformed into an app to give patients and clinicians the easiest possible access to it. Continue Reading…

Support the Safe Step Act
Support the Safe Step Act

November 16, 2021

Advocate to Congress for Step Therapy Continue Reading…

Together Again!  Members Meet in Rehoboth for the Day
Together Again! Members Meet in Rehoboth for the Day

November 15, 2021

After the long separation due to the pandemic, FIRST members were very happy when they were once again able to connect in person. Continue Reading…

New Books Aim to Inspire Confidence and Acceptance
New Books Aim to Inspire Confidence and Acceptance

November 11, 2021

Words have the ability to make a person laugh or to fall in love. Words can hurt or heal. Continue Reading…

Q & A - November 30th E-News Lotioning Distrations
Q & A - November 30th E-News Lotioning Distrations

November 08, 2021

Bathing and Lotioning distractions Continue Reading…

Q & A - November 30th E-News - Sleeping
Q & A - November 30th E-News - Sleeping

November 08, 2021

Q: Do those with ichthyosis tend to need more sleep than average? Continue Reading…

Q & A - November 15th E-News - IEP
Q & A - November 15th E-News - IEP

November 04, 2021

Suggestions for IEPs and students with ichthyosis Continue Reading…

Other People's Reactions to You or Your Child
Other People's Reactions to You or Your Child

November 03, 2021

Other peoples reactions to your or your child's appearance Continue Reading…

Rash from Pull Up
Rash from Pull Up

November 03, 2021

Skin rash from pull ups. Continue Reading…

Pfizer, Novartis, Janssen and Other Biotechs Sign onto NIH/FDA program to Develop New Gene Therapies for Rare Diseases
Pfizer, Novartis, Janssen and Other Biotechs Sign onto NIH/FDA program to Develop New Gene Therapies for Rare Diseases

November 02, 2021

Ten top drugmakers are joining forces with the NIH, the FDA and other nonprofits to streamline the development of new gene therapies for those with rare diseases. Continue Reading…

Risk Mitigation in Direct-to-Patient Clinical Trials
Risk Mitigation in Direct-to-Patient Clinical Trials

November 02, 2021

Flexibility became an immediate need for sponsors, CROs, clinical sites, and patients. Continue Reading…

NETHERTON: Quoin Pharmaceuticals Announces Signing of Exclusive License from Queensland University of Technology, Australia
NETHERTON: Quoin Pharmaceuticals Announces Signing of Exclusive License from Queensland University of Technology, Australia

November 02, 2021

Addition of Bi-Functional Protein Is Complementary to Lead Asset QRX003 for Netherton Syndrome 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, 2021

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

Q & A  - October 31st  E-News - Piercing
Q & A - October 31st E-News - Piercing

October 26, 2021

Ichthyosis & Belly button piercing teen Continue Reading…

Q & A - October 31st E-News - Fever and Skin
Q & A - October 31st E-News - Fever and Skin

October 22, 2021

Ichthyosis and fever and the impact to skin Continue Reading…

Q & A  - Oct 15th E-News Casting
Q & A - Oct 15th E-News Casting

October 11, 2021

Casting tips from FIRST's Private Parents group Continue Reading…

Timber Pharmaceuticals Reports Positive Top-line Results from Phase 2b CONTROL Study Evaluating TMB-001 in Moderate to Severe Congenital Ichthyosis
Timber Pharmaceuticals Reports Positive Top-line Results from Phase 2b CONTROL Study Evaluating TMB-001 in Moderate to Severe Congenital Ichthyosis

October 08, 2021

Timber announced positive top-line data from its Phase 2b CONTROL study evaluating TMB-001in patients with moderate to severe congenital ichthyosis (CI). Continue Reading…

Q & A  - Oct 15th E-News
Q & A - Oct 15th E-News

October 05, 2021

IV's and Microphones with ichthyosis Continue Reading…

Timber Pharma Presents Phase 2a Study Data of Congenital Ichthyosis Therapy at EADV 2021
Timber Pharma Presents Phase 2a Study Data of Congenital Ichthyosis Therapy at EADV 2021

October 04, 2021

Timber Pharmaceuticals (NYSE:TMBR) presents results from Phase 2a study Continue Reading…

Building a Research-focused Foundation: Guidance from a Rare-Disease Advocate
Building a Research-focused Foundation: Guidance from a Rare-Disease Advocate

October 04, 2021

Being diagnosed with a rare disorder can be frightening and lonely. Continue Reading…

Meaningful Words from Rochelle
Meaningful Words from Rochelle

October 01, 2021

Shoutout to all my fellow folks living with disabilities and invisible illnesses who can “pass” as “normal” Continue Reading…

Long-term Use of Systemic Retinoids Effective for Darier disease
Long-term Use of Systemic Retinoids Effective for Darier disease

September 23, 2021

Prolonged use of systemic retinoids was safe and effective for the treatment of patients with moderate to severe Darier disease Continue Reading…

Unreported Features Identified in New Patients With CEDNIK Syndrome
Unreported Features Identified in New Patients With CEDNIK Syndrome

September 23, 2021

This study may expand the genotypic and phenotypic spectrum of the disease CEDNIK syndrome Continue Reading…

Hearing Our Patients With Alopecia Areata
Hearing Our Patients With Alopecia Areata

September 22, 2021

Alopecia Areata discussion by FIRST MSAB member Dr. Brittany Craiglow Continue Reading…

Q & A - September 15th E-News - Saltwater
Q & A - September 15th E-News - Teens
Q & A - September 15th E-News - Teens

September 08, 2021

Teens, Puberty, Skin, Supplements & Odor Continue Reading…

Giving Birth While Having Ichthyosis
Giving Birth While Having Ichthyosis

August 30, 2021

Giving birth while having ichthyosis Continue Reading…

Ichthyosis Resource for School Nurses and Educators
Ichthyosis Resource for School Nurses and Educators

August 27, 2021

resource for nurses and school educators that was developed by PeDRA Continue Reading…

Q & A  - August 31 E-News
Q & A - August 31 E-News

August 26, 2021

Questions about masks Continue Reading…

Summary of Eye Care and Management Online Discussion Session
Summary of Eye Care and Management Online Discussion Session

August 23, 2021

Questions and Answers concerning problems with the management of eye care in those affected by ichthyosis Continue Reading…

Thoughts About Staring
Thoughts About Staring

August 16, 2021

Thoughts about staring from an experienced FIRST dad Continue Reading…

Q & A - August 16 E-News
Q & A - August 16 E-News

August 10, 2021

Itch tips from FIRST's private Facebook Group for parents Continue Reading…

Q & A  - August 16 E-News2
Q & A - August 16 E-News2

August 10, 2021

Medication allergies and ichthyosis Continue Reading…

'Dr Pimple Popper': Tamyra Slices Her Foot and Uses Sandpaper
'Dr Pimple Popper': Tamyra Slices Her Foot and Uses Sandpaper

August 06, 2021

Tamyra discusses possible treatments for her ichthyosis vulgaris Continue Reading…

Q & A - July 30 E-News 2
Q & A - July 30 E-News 2

July 26, 2021

Adult sunscreen Continue Reading…

An Overview of Acquired Ichthyosis
An Overview of Acquired Ichthyosis

July 21, 2021

Learn about Acquired Ichthyosis Continue Reading…

Q & A - July 30 E-News
Q & A - July 30 E-News

July 21, 2021

Keeping warm after bathing or swimming Continue Reading…

Why I'm Proudly Wearing Shorts This Summer as Someone With Ichthyosis
Beauty is More Than Skin Deep
Beauty is More Than Skin Deep

July 15, 2021

FIRST Member Christina Raj is a finalist of The International Glamour Project Mrs. India 2020-2021 Continue Reading…

Q & A - July 15th E-News 2
Q & A - July 15th E-News 2

July 14, 2021

How to handle staring when your child has ichthyosis Continue Reading…

Q & A - July 15th E-News
Q & A - July 15th E-News

July 13, 2021

Management of Harlequin Ichthyosis Continue Reading…

Juvenile Idiopathic Arthritis in Harlequin Ichthyosis
Juvenile Idiopathic Arthritis in Harlequin Ichthyosis

July 01, 2021

Harlequin and Arthritis by DocWire News Continue Reading…

FIRST Quarterly Literature Review, June 2021
FIRST Quarterly Literature Review, June 2021

June 28, 2021

Quarterly Literature Review FIRST's MSAB Continue Reading…

Board Spotlight - Mark Evans
Board Spotlight - Mark Evans

June 28, 2021

Mark discusses his involvement with FIRST Continue Reading…

Q & A - June 30th E-News
Q & A - June 30th E-News

June 24, 2021

Ichthyosis and diaper rash from FIRST's private FB group Continue Reading…

Development of a Protein Replacement Therapy for Peeling Skin Syndrome
Development of a Protein Replacement Therapy for Peeling Skin Syndrome

June 23, 2021

Specific protein replacement therapy for CDSN deficiency Continue Reading…

Ichthyosis Book to be Published
Ichthyosis Book to be Published

June 10, 2021

You are invited to send in a photo for our upcoming children’s book on ichthyosis! Continue Reading…

FIRST is Proud to Announce a Long-Term Partnership with Beiersdorf Inc.
FIRST is Proud to Announce a Long-Term Partnership with Beiersdorf Inc.

June 08, 2021

Beiersdorf announces a long term partnership with The Foundation for Ichthyosis & Related Skin Types, Inc. Continue Reading…

Q & A - June 15th E-News
Q & A - June 15th E-News

June 08, 2021

Q & A from FIRST's private Facebook Groups. Continue Reading…

FIRST Announces 2021 UFIRST Scholarship Recipients
FIRST Announces 2021 UFIRST Scholarship Recipients

June 01, 2021

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

Mixing Lotions
Mixing Lotions

May 27, 2021

A FIRST Adult member happened upon this combination and it worked for her, so she wants to share it. Continue Reading…

Removing Grease from Your Washing Machine
Removing Grease from Your Washing Machine

May 27, 2021

Many members have issues with the build up of grease in their washing machines due to the use of creams and lotions. Here are some solutions to help with that. Continue Reading…

Vaness Speaks About EKV
Vaness Speaks About EKV

May 26, 2021

Vanessa speaks about EKV during IAM Continue Reading…

FIRST Beiersdorf Zoom Sessions
FIRST Beiersdorf Zoom Sessions

May 18, 2021

FIRST and Beiersdorf are partnering to host this four session series for affected members ages 16-26. Continue Reading…

Love What Matters Harper
Love What Matters Harper

May 13, 2021

Love What Matters profiles Harper's story Continue Reading…

Diya & Aliya Thank You
Diya & Aliya Thank You

May 11, 2021

A recipient of the Diya & Aliya fund sent this note to thank the donors who fund it. Continue Reading…

The Ultimate Guide to Skin Cancer Prevention
The Ultimate Guide to Skin Cancer Prevention

May 05, 2021

Your skin is the largest organ in your body, and it’s often exposed to dangers. The sun’s rays, for example, can alter your cells and cause the development of skin cancer. Continue Reading…

Q & A - April 30th E-News
Q & A - April 30th E-News

April 22, 2021

Pools and Sunscreen Continue Reading…

Summer Camp Announcement!
Summer Camp Announcement!

April 16, 2021

Camp Wonder Summer Camp Announcement Continue Reading…

Q & A - April 15th E-News
Q & A - April 15th E-News

April 12, 2021

Q&A Spring Peel and Traveling issues Continue Reading…

Q & A - March 31st E-News
Q & A - March 31st E-News

March 24, 2021

Breastfeeding and other symptoms along with ichthyosis Continue Reading…

Transforming Rare Disease Treatment
Transforming Rare Disease Treatment

March 17, 2021

Rare Diseases and Orphan Drugs Continue Reading…

Q & A - March 15th E-News
Q & A - March 15th E-News

March 04, 2021

Itchy ears and bloody nose Continue Reading…

Inclusion Statement
Inclusion Statement

March 01, 2021

FIRST Announcement Inclusion Continue Reading…

Pregnancy & Ichthyosis
Pregnancy & Ichthyosis

February 26, 2021

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

Cash’s Story as Told by his Mom, Kara
Cash’s Story as Told by his Mom, Kara

February 25, 2021

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

Q & A - Feb. 28th E-News
Q & A - Feb. 28th E-News

February 25, 2021

Overheating and extremely dry skin Continue Reading…

Advocacy Podcast - Find Your Rare
Advocacy Podcast - Find Your Rare

February 24, 2021

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

Member Profile - Carlie F.
Member Profile - Carlie F.

February 16, 2021

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

hiPSC-Derived Epidermal Keratinocytes from Ichthyosis Patients Show Altered Expression of Cornification Markers
hiPSC-Derived Epidermal Keratinocytes from Ichthyosis Patients Show Altered Expression of Cornification Markers

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…

Woman Pleads Guilty to Hate-Crime Against Ulster County Family
Woman Pleads Guilty to Hate-Crime Against Ulster County Family

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…

Gene Delivery to the Skin – How Far Have We Come?
Gene Delivery to the Skin – How Far Have We Come?

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…

What is Genomics?
What is Genomics?

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…

"Becoming an Empowered Patient" Webinar
"Becoming an Empowered Patient" Webinar

January 26, 2021

Webinar hosted by NeedyMeds Continue Reading…

Global Genes - Compassionate Care Program
Global Genes - Compassionate Care Program

January 26, 2021

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

Clinical Research in 2021: A New Era of Collaboration and Innovation
Clinical Research in 2021: A New Era of Collaboration and Innovation

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…

Three Pillars of Mental Health: Good Sleep, Exercise, Raw Fruits and Veggies
Three Pillars of Mental Health: Good Sleep, Exercise, Raw Fruits and Veggies

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…

NORD's Listing of Financial Resources for Rare Disease
NORD's Listing of Financial Resources for Rare Disease

January 19, 2021

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

Food & Drinks Winter Diet For Skin: 6 Diet Mistakes You Must Avoid For Good Skin
Food & Drinks Winter Diet For Skin: 6 Diet Mistakes You Must Avoid For Good Skin

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…

How to Ease Social Isolation During the Pandemic
How to Ease Social Isolation During the Pandemic

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…

XLI - Placental Steroid Sulphatase Deficiency: An Approach to Antenatal Care and Delivery by Ann Saudi Med
XLI - Placental Steroid Sulphatase Deficiency: An Approach to Antenatal Care and Delivery by Ann Saudi Med

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…

Closing in on the Circuitry of Chronic Itch
Closing in on the Circuitry of Chronic Itch

December 17, 2020

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

Three Good Things – A Way to Tune Into the Positive Events in Your Life
Three Good Things – A Way to Tune Into the Positive Events in Your Life

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…

Darier Disease - My Skin, My Pain
Darier Disease - My Skin, My Pain

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…

Use of Telemedicine for Ichthyosis: Patient Advocacy Group as Conduit to Expert Physician Advice
Use of Telemedicine for Ichthyosis: Patient Advocacy Group as Conduit to Expert Physician Advice

December 15, 2020

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

Predicting Heart Disease from the Skin
Predicting Heart Disease from the Skin

December 14, 2020

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

KID Syndrome - Warwick University researchers to investigate possible link between genetic mutation and controlled breathing
KID Syndrome - Warwick University researchers to investigate possible link between genetic mutation and controlled breathing

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…

Scalp Care Resource Sheet & Member Tips
Scalp Care Resource Sheet & Member Tips

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…

Increasing Enrollment of Underrepresented Populations in Clinical Trials
Increasing Enrollment of Underrepresented Populations in Clinical Trials

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…

 New Research Reveals Children with Visible Differences More at Risk of Loneliness
New Research Reveals Children with Visible Differences More at Risk of Loneliness

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…

Use of Epidermal Growth Factor Receptor Inhibitor Erlotinib for Olmsted Syndrome
Use of Epidermal Growth Factor Receptor Inhibitor Erlotinib for Olmsted Syndrome

November 16, 2020

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

Teen Tips, Tricks & Advice from FIRST Adult Members
Teen Tips, Tricks & Advice from FIRST Adult Members

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…

New Research Finds Vitamin B3 Protects Skin Cells From the Effects of UV Exposure
New Research Finds Vitamin B3 Protects Skin Cells From the Effects of UV Exposure

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…

Q&A: COVID 19, Climate Change, And The Skin
Q&A: COVID 19, Climate Change, And The Skin

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…

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…

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…

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…

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…

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…

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…

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…

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…

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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