November 18, 2025

Both internal and external stressors can disrupt the skin barrier. Environmental factors and lifestyle factors affect the skin barrier too. Continue Reading…

November 18, 2025

This observation describes 2 siblings with LI treated with acitretin and dupilumab. Continue Reading…

November 11, 2025

Adherence in chronic disease management is driven by motivation, perceived benefits, and emotional state, not just discipline. Continue Reading…

November 11, 2025

Taryn's member story about her son Nate Continue Reading…

November 06, 2025

Neonatal erythroderma (NE) is a challenging presentation, characterised by widespread redness and scaling of the skin from birth. Continue Reading…

November 03, 2025

The therapy targets kallikrein proteases to restore skin barrier integrity and alleviate symptoms, showing promising results in clinical trials. Continue Reading…

November 01, 2025

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

October 28, 2025

How to advocate for yourself in a hospital or a nursing home Continue Reading…

October 22, 2025

ATR-01 for ichthyosis vulgaris using engineered Staphylococcus epidermidis to deliver filaggrin protein, improved skin barrier function and delivered filaggrin effectively Continue Reading…

October 20, 2025

Breaking the itch scratch cycle Continue Reading…

October 17, 2025

Resource sheet and tips regarding aging. Continue Reading…

October 13, 2025

A project from a mom Continue Reading…

October 13, 2025

Community-based model enhances dermatology trials by focusing on representation, accessibility, and real-world applicability, addressing historical gaps in diversity and data relevance. Continue Reading…

October 09, 2025

XLI is recognised as a multisystem disorder with significant psychological and cardiac comorbidities. Screening for these conditions is critical to improving outcomes for affected individuals. Continue Reading…

October 08, 2025

Know your rights regarding IEPs and 504 plans Continue Reading…

September 25, 2025

National retrospective cohort study identified cases of ichthyosis Continue Reading…

September 25, 2025

FIRST member Stefanos Koutsoukos secures an NIH Research Award Continue Reading…

September 24, 2025

FIRST's Research Committee is proud to announce the 2025 Research Grant Program recipients Continue Reading…

September 18, 2025

The Social Security Administration (SSA) has added more than 10 new conditions to its Compassionate Allowances (CAL) list. Continue Reading…

September 10, 2025

Guide for working adults Continue Reading…

September 08, 2025

Fundraiser success! Continue Reading…

September 08, 2025

Portia Cina's TikToks about ichtyosis confetti are increasing the awareness of the condition. Continue Reading…

September 05, 2025

Portia Cina was born with ichthyosis confetti, an extremely rare genetic skin condition that leaves bright red patches scattered across her body. Continue Reading…

August 27, 2025

A new study published Aug. 4 in PNAS found that for people with a rare form of ichthyosis, medications previously used to treat cancer could be repurposed for treatment of the skin disorder. Continue Reading…

August 25, 2025

For affected members and/or their caregivers, please consider taking this short survey to let us know what it is like to have ichthyosis. Continue Reading…

August 25, 2025

The EASI and ISS improved markedly Continue Reading…

August 21, 2025

Katri has completed marathons Continue Reading…

August 19, 2025

Congenital and neonatal skin disorders, though often rare and diagnostically challenging, offer a unique window into a broad array of genetic, metabolic, infectious, and systemic conditions. Continue Reading…

August 18, 2025

While our patient with KID syndrome has a variant in the GJB2 gene, it is possible that patients with other variants may have different responses to mefenamic acid. Continue Reading…

August 11, 2025

Please support Dr. Choate's lab members as they swim for ichthyosis Continue Reading…

August 04, 2025

Helping Kids with Ichthyosis Feel Safe, Included, and Confident at School  Continue Reading…

July 28, 2025

A recent social media post by Jeyza, just might speak to you. Continue Reading…

July 25, 2025

Tips for Bathing and Exfoliation Continue Reading…

July 25, 2025

What are your rights in education? Continue Reading…

July 24, 2025

Dermatological diseases more severely affect women's work performance and daily activities compared to men, with higher absenteeism and work impairment observed in females. Continue Reading…

July 21, 2025

In this cross-sectional study of 94 photographs of 61 individuals, the Ichthyosis Scoring System demonstrated equal individual body site reliability when scoring scale and erythema for all phototypes Continue Reading…

July 08, 2025

The gene changes (called variants) caused the KLF4 protein to work poorly, affecting how the skin forms. Continue Reading…

July 08, 2025

The tele-dermatology initiative targets underserved communities in Washington, DC Continue Reading…

July 08, 2025

We asked our members this question and they responded. Continue Reading…

June 30, 2025

Developing a framework for rare diseases won’t only help the people living with rare diseases. Many advocates argue that it is a path to equitable, universal healthcare. Continue Reading…

June 18, 2025

After a three-month treatment with Vunakizumab, symptoms alleviated significantly and inflammatory factor levels normalized. Continue Reading…

June 17, 2025

As the JCA process expands to include orphan medicines in January 28, the focus for all stakeholders must shift from procedural compliance to authentic, early engagement with rare disease communities. Continue Reading…

June 16, 2025

FIRST former Board Vice President and FIRST member Tracie Pretak details her experience of the 2025 Grand Canyon Hike Continue Reading…

June 05, 2025

FDA plans to "rapidly make available” even small advances in rare disease treatments. Continue Reading…

June 05, 2025

The efficient insertion of gene-sized DNA sequences at user-specified genomic sites is a long-standing goal in genome editing. Continue Reading…

June 05, 2025

When patients are confronted with unexplained jargon, many simply “switch off” or disengage from the conversation altogether. Continue Reading…

May 28, 2025

Calvin's essay about ichthyosis and FIRST. Continue Reading…

May 27, 2025

Using the UK Biobank, they discovered an unexpected association between Xp22.31 micro-deletions encompassing STS and a substantially increased risk of developing Atrial Fibrillation/Flutter. Continue Reading…

May 27, 2025

The U.S. Food and Drug Administration (FDA) has cleared a second Netherton Syndrome (NS) pivotal clinical study from Quoin Pharmaceuticals Ltd. Continue Reading…

May 14, 2025

Read about Dr. Andrea Rustad Continue Reading…

May 12, 2025

Patient-focused foundations like FIRST and PC Project are essential for advancing research in rare genetic skin diseases. Smaller grants from foundations can significantly impact researchers. Continue Reading…

May 08, 2025

Generative Skin will expand to include new skincare ingredients and features for user education on environmental damage and ingredient combinations. Continue Reading…

April 28, 2025

Member Story of Tyla and Alan Joe Continue Reading…

April 28, 2025

Items you can travel with Continue Reading…

April 28, 2025

The Skin Quality Index addresses communication gaps between patients and providers, enhancing consultations and treatment outcomes and empowers patients. Continue Reading…

April 15, 2025

Tattoos and Ichthyosis Continue Reading…

April 10, 2025

Fast-track designation for ResVita Bio for Netherton Syndrome Continue Reading…

April 09, 2025

New gene- and protein product function-based classification focuses on shared mechanisms of disease pathogenesis, with the possibility that grouped disorders may respond similarly to new therapeutics. Continue Reading…

April 09, 2025

This study explored the self-reported support needs of affected adults to better understand their needs and inform support provision. Continue Reading…

April 03, 2025

Promising results highlight the potential of bentonite-based products for managing EI, though further clinical trials are needed to evaluate long-term safety and efficacy. Continue Reading…

April 03, 2025

Azitra is pioneering the use of engineered living organisms to address rare conditions like Netherton syndrome and ichthyosis vulgaris. Continue Reading…

April 01, 2025

WHO calls for strengthening the global response against invasive fungal diseases and antifungal resistance Continue Reading…

March 24, 2025

To report the real-life effects of biologics on congenital ichthyoses. Continue Reading…

March 24, 2025

Proper nutrition and nutraceuticals can help to manage skin conditions such as acne, eczema, and psoriasis. Continue Reading…

March 24, 2025

Supraventricular arrhythmias have been reported in XLI; however, ventricular arrhythmias and sudden cardiac arrest have not been previously documented in adult males with STS deletions. Continue Reading…

March 11, 2025

In this article, they examined the prevalence and correlates of suicidal ideation, anxiety, and depression in patients with LI using a cross-sectional survey design and standardized instruments. Continue Reading…

March 11, 2025

Investigator’s Global Assessment (IGA) and Pruritus or itch, demonstrated highly significant clinical improvements from baseline after two weeks of treatment with QRX003 on patient’s whole body. Continue Reading…

March 11, 2025

FIRST member David Artz starts a podcast Continue Reading…

March 05, 2025

This case report of a 15-year-old male illustrates the critical interplay between dermatological conditions and ocular health. Continue Reading…

March 05, 2025

Dermatology Times recognizes Rare Disease Day in an effort to amplify the voices of the over 300 million individuals affected by rare diseases. Continue Reading…

February 25, 2025

Tera on Capitol Hill Continue Reading…

February 24, 2025

Repurposing of such FDA-approved drugs for new indications may prove more tenable for rare disorders such as DD and HHD. Continue Reading…

February 19, 2025

Dermatological conditions can impose a disease burden comparable to systemic illnesses, significantly affecting patients' quality of life. Continue Reading…

February 19, 2025

Renata Block, MMS, PA-C, and Michael Rubio, PA-C discuss the complexities of developing a telehealth program in the world of dermatology. Continue Reading…

February 14, 2025

FIRST members answer a question. Continue Reading…

February 13, 2025

Hailey-Hailey Disease and dupilumab Continue Reading…

February 11, 2025

Involvement in clinical trials keeps practices at the cutting edge of new treatment opportunities. Continue Reading…

February 11, 2025

Dr. Nanette Silverberg emphasizes the importance of new treatments and engaging with poster sessions to explore emerging research. Continue Reading…

February 10, 2025

The digital nomad lifestyle offers unparalleled freedom, even for those living with disabilities. Continue Reading…

February 04, 2025

A case study highlighted a patient with severe Hailey-Hailey disease who improved with dupilumab, a monoclonal antibody for atopic dermatitis. Continue Reading…

January 22, 2025

The consequences of skin disease on mental health and well-being are often more detrimental, impacting the ability to conduct routine daily activities and engage socially. Continue Reading…

January 21, 2025

Dental treatment and management of someone with congenital ichthyosis Continue Reading…

January 18, 2025

Genevieve's story about Darier Disease Continue Reading…

January 17, 2025

Their is an untapped potential of NPs and PAs contributing written case studies and interviews. “Dermatology Times provides an incredible opportunity to share expertise.” Continue Reading…

January 16, 2025

An interview with Dr. Christopher G. Bunick, MD, PhD, a physician-scientist at Yale School of Medicine and part of FIRST's Research Committee and Medical & Scientific Advisory Board Continue Reading…

January 14, 2025

ResVita plans to apply for "orphan" and "breakthrough therapy" designations Continue Reading…

January 09, 2025

Organic filter-based sunscreen improved skin sensitivity, transepidermal water loss, and skin corneum hydration in patients with sensitive skin. Continue Reading…

January 09, 2025

Accomplishment Alert! Hannah makes court and raises money! Continue Reading…

December 19, 2024

A story of a beautiful girl with Erythrokeratodermia Cardiomyopathy (EKC). Continue Reading…

December 13, 2024

This study provides novel insights into the clinical and genetic spectrum of patients with palmoplantar keratoderma. It demonstrates the value of genetic testing. Continue Reading…

December 13, 2024

Systemic therapies for congenital ichthyosis Continue Reading…

December 13, 2024

FIRST member Mary Ashley Mercer-Bush, MD successfully passed the certification exam in Psychiatry Continue Reading…

December 13, 2024

Tik Tok and Rare Disease Awareness Continue Reading…

December 11, 2024

Christmas in the park, San Jose, California Continue Reading…

December 03, 2024

Exploring the social influence on the brain signatures of self-esteem. Continue Reading…

December 03, 2024

Komlosi et al (2024) delineate clinical and morphological features of a new type of ADLI and were able to unravel causative mutations in the gene NKPD1. ADLI does indeed keep surprising us. Continue Reading…

December 03, 2024

Harper has harlequin ichthyosis, a rare, congenital skin condition that causes the skin to thicken and form hard, scaly patches in diamond or triangular patterns. Continue Reading…

November 26, 2024

Sjögren-Larsson Syndrome (SLS) may sound similar to what you are experiencing with milestone delays but aren’t yet diagnosed and would like to get in touch with other families, please reach out. Continue Reading…

November 21, 2024

The FDA’s recent organizational changes and real-world evidence offer patient advocacy organizations unique opportunities to influence and shape the development of drugs and medical devices. Continue Reading…

November 20, 2024

Drug repurposing trials for ichthyosis reveal complexity in the long-untreated disease. Continue Reading…

November 20, 2024

Hypertrophic lichen planus is an idiopathic inflammatory condition characterized by hyperkeratotic plaques or nodules, typically occurring bilaterally on the wrists, ankles, or lower extremities. Continue Reading…

November 08, 2024

Patients with congenital ichthyosis are at an increased risk for onychomycosis, tinea corporis, verruca vulgaris, and tinea pedis when compared with those without congenital ichthyosis. Continue Reading…

November 05, 2024

Clinical Assessment Is Being Performed on a Pediatric Patient at Children’s Health Ireland in Dublin Continue Reading…

November 05, 2024

In this study, we identify biallelic germline variants in the DDX41 gene in a patient with bone dysplasia, ichthyosis, and dysmorphic features. Continue Reading…

October 29, 2024

Mikela discusses her journey with mental health and how she will share resources moving forward. Continue Reading…

October 25, 2024

Navigate pitch winners are pushing forward with cutting-edge business ventures in advanced cooling technology Continue Reading…

October 25, 2024

While generally benign, it can be associated with premalignant or malignant lesions, making its management critical. Here, we present a case of a 66-year-old patient diagnosed with uterine ichthyosis Continue Reading…

October 25, 2024

Several case reports have recently been published on the use of anti–IL-4Ra in the management of congenital ichthyosis. Continue Reading…

October 25, 2024

Carter Bresee, who has two rare skin conditions called lamellar ichthyosis and ectropion, had been unable to close his eye lids since birth and could not blink. Continue Reading…

October 25, 2024

My lifelong journey with anxiety and my experiences living with ichthyosis are some of the reasons I became interested in psychology. My goal is to help others through therapy Continue Reading…

October 11, 2024

Sign up to volunteer for FIRST's strategic planning committees Continue Reading…

October 08, 2024

NIH has awarded the company a $2.03M Phase II Small Business Innovation Research (SBIR) grant to advance RVB-003, a novel treatment for Netherton Syndrome Continue Reading…

October 04, 2024

Potential best-in-class targeted treatment for Netherton syndrome is company’s first protein therapeutic to advance to the clinic— Initial data from trial expected by end of 2025 Continue Reading…

September 30, 2024

Mouse models of both acute and chronic itch can be and have been used to preclinically define, validate, and predict therapeutic targets. Continue Reading…

September 25, 2024

Taking care of your mental health when you have a baby in the NICU Continue Reading…

September 24, 2024

Salicylic Acid for Heels Continue Reading…

September 14, 2024

Update on the ASCEND study from Timber Pharmaceuticals, Inc. – a LEO Pharma company Continue Reading…

September 10, 2024

A testimony to a Christian Community my wife and I belong to about our journey having children with Ichthyosis Continue Reading…

September 03, 2024

Patients with multiple LoF mutations tend to have more severe disease but a subset of compound heterozygous patients still display mild phenotypes Continue Reading…

August 23, 2024

A remembrance of Captain Joe Galluccio Continue Reading…

August 22, 2024

Highly visible skin conditions can lead to depression and other mental health disorders. Clinicians can work together to reduce patient stress and improve quality of life. Continue Reading…

August 22, 2024

Part 1: Foundations and Pre-Clinical Research Continue Reading…

August 20, 2024

People with rare diseases experience higher levels of anxiety, depression, and fatigue, and decreased social engagement. Continue Reading…

August 20, 2024

This report details the actions organizations and sectors from across the enterprise can take to create a clinical trials enterprise that is diverse, equitable, inclusive, and accessible to all. Continue Reading…

August 20, 2024

Applying for aid through NORD's Caregiver Respite Program. Continue Reading…

August 15, 2024

Chairman Comer detailed how the House Oversight Committee has obtained over 140,000 pages of documents and communications exposing Pharmacy Benefit Managers’ and their role in rising drug prices. Continue Reading…

August 01, 2024

The findings imply that the loss of FAM83G-CK1a interaction and subsequent attenuation of WNT signalling underlie the pathogenesis of PPK caused by the FAM83GR265P variant. Continue Reading…

July 29, 2024

This research enhances our understanding of the microbiological, immunological, and molecular properties of CI and should provide critical information for improving therapeutic management. Continue Reading…

July 23, 2024

Peter Marinkovich, MD, reflects on the significant growth in advanced therapy development, particularly in rare skin diseases. Continue Reading…

July 18, 2024

The FDA reviews review medical products for rare disease patients Continue Reading…

July 11, 2024

A company developed by FIRST member Jenna, affected with EI. Continue Reading…

June 19, 2024

we characterize the skin microbiome from seven ichthyosis genotypes, at species, strain, and metabolic pathway levels. Continue Reading…

June 12, 2024

Transplanting healthy skin to diseased areas may be treatment option for epidermolytic ichthyosis (EI) and ichthyosis with confetti (IWC). Continue Reading…

June 11, 2024

First large study to look at mental health problems in children with chronic skin conditions Continue Reading…

June 06, 2024

They identified and diagnosed a novel inherited condition called Dyschromatosis, Ichthyosis, Deafness, and Atopic Disease (DIDA) syndrome. Continue Reading…

May 16, 2024

41% of people with long-term itchiness have fatigue Continue Reading…

May 13, 2024

Five FIRST members hiked the Grand Canyon again in 2024. Continue Reading…

May 06, 2024

Genetic deletions in a specific region of the X chromosome (Xp22.31) can cause problems with mood and memory. Continue Reading…

May 03, 2024

Ichthyosis info on Tik Tok from physician, and nonphysician sources (such as from patients) to guide healthcare professionals interested in leveraging this platform for public health.  Continue Reading…

April 26, 2024

Azitra announces new pre-clinical data for Netherton Syndrome Continue Reading…

April 25, 2024

Harper's accomplishments with archery. Continue Reading…

April 24, 2024

There are a number of marketing breakthroughs for new treatments, including some available and prospective gene and cell therapies. Continue Reading…

April 04, 2024

A love story for two with Lamellar ichthyosis Continue Reading…

April 04, 2024

Skin conditions can have a psychological impact on a child and their caregivers Continue Reading…

March 27, 2024

Ichthyoses are a heterogeneous group of cornification disorders. Ichthyosis Vulgaris (IV) ([OMIM] #146,700), which can be inherited as autosomal semi-dominant mutation in the filaggrin gene (FLG). Continue Reading…

March 20, 2024

Ex vivo gene therapy is a promising approach to treat devastating skin fragility diseases. Continue Reading…

March 14, 2024

The congenital ichthyosis session the 2024 AAD Annual Meeting covered real-world patient cases and treatments on the horizon. Continue Reading…

March 05, 2024

Include teen patients in both the company’s open label and placebo controlled studies expected to expand the number of eligible subjects, to expedite recruitment and lead to a more robust data set Continue Reading…

February 29, 2024

Rare diseases present a formidable global health challenge, affecting over 300 million individuals worldwide. Continue Reading…

February 26, 2024

A study from the University of Washington (UW) indicates that the blistering and recurrent skin infections seen in patients with Darier disease may be reduced by MEK inhibitors. Continue Reading…

February 13, 2024

At BioCryst Pharmaceuticals, we work tirelessly, not just for, but with patient communities. Continue Reading…

January 12, 2024

Rare disease, if a health of even one family member is affected even for normal issues, It affects the entire family?  Continue Reading…

January 05, 2024

Certain cells in the skin contain memory of particular skin conditions. Continue Reading…

January 02, 2024

Great advances have been made in the field of heritable skin disorders using next-generation sequencing Continue Reading…

January 02, 2024

Dr. Neal Rajan shares advice about how best to do this as a dermatologist in the NHS and encourage those of you with an interest in genetic skin diseases to get involved with some of his initiatives. Continue Reading…

January 02, 2024

The cause of acquired ichthyosis is either unknown (idiopathic) or occurs secondary to an underlying disorder. Continue Reading…

December 13, 2023

Jennie talks about seeing her daughter's eyes for the first time. Continue Reading…

December 12, 2023

Additional positive clinical data from its ongoing open-label study evaluating the safety and efficacy of QRX003 as a potential treatment for Netherton Syndrome (NS). Continue Reading…

November 14, 2023

FIRST attends the 2023 PeDRA Conference Continue Reading…

October 23, 2023

Thomas shares a product that has helped his skin Continue Reading…

October 02, 2023

FIRST is demanding the legal, ethical, and accurate representation of ichthyosis and related skin types. Simply put, we are demanding basic human rights for people with ichthyosis. Continue Reading…

September 29, 2023

James Ellis discusses the success he had with the Timber trial Continue Reading…

September 25, 2023

Awareness cards are a great conversation starter Continue Reading…

July 19, 2023

Staring and the whispering Continue Reading…

July 14, 2023

The provision of sufficient calories in the diet to support growth as well as extra fluid to replace skin losses can be difficult. Continue Reading…

July 13, 2023

Tips for taying Cool in the heat Continue Reading…

June 26, 2023

An essay from FIRST member Ema Hodgkinson Continue Reading…

June 21, 2023

A rare medical diagnosis impacts mental health negatively Continue Reading…

June 21, 2023

PSA to normalize physical differences without feeling the need to comment on them Continue Reading…

June 06, 2023

“The Debt Ceiling Deal protects vital access to Medicaid coverage, ensuring individuals and families with rare diseases continue to have the comprehensive health care they need to survive and thrive; Continue Reading…

May 25, 2023

Health advocates from all over the world met in Miami Continue Reading…

May 10, 2023

Maryia's skin care tips Continue Reading…

April 11, 2023

Autosomal recessive congenital ichthyosis is a non-syndromic congenital disorder of cornification characterized by abnormal scaling of the skin. The three major phenotypes are LI, CIE and Harlequin. Continue Reading…

April 05, 2023

Our guide helps deaf and hard of hearing students learn about online accommodations colleges offer Continue Reading…

March 23, 2023

John DiGiovanna memoriam Continue Reading…

March 20, 2023

Dr. Phil Fleckman has passed away. Continue Reading…

February 21, 2023

Yale dermatologists are playing a key role in testing a new treatment for an often-disfiguring group of skin diseases that develop in children. Continue Reading…

February 03, 2023

It’s essential for parents to talk to them about these conditions, so children can feel more empowered and secure in themselves. Continue Reading…

January 25, 2023

The ichthyosis community has gained a special angel. Continue Reading…

December 01, 2022

PeDRA group of patient representatives and parents of children with cutaneous disease, pursued a multistep process to identify comprehensive, high-priority research needs. Continue Reading…

November 10, 2022

Contact your Members of Congress TODAY and urge them to support reforms to improve research and development for rare diseases treatments in any end-of-year spending bill Continue Reading…

November 03, 2022

This article discusses ichthyosis and how it’s linked to cancer. The write-up also briefly explores the various cancer types that can cause ichthyosis. Continue Reading…

November 02, 2022

patients with palmoplantar keratoderma associated with pathogenic variants in the FLG gene and as a part of ichthyosis vulgaris spectrum. Continue Reading…

October 04, 2022

At present, there is no standard terminology for describing the spectrum of constitutive skin colours across human populations. Continue Reading…

September 27, 2022

Christopher Boynton, along with The American Academy of Dermatology (AAD) and The Coalition of Skin Diseases (CSD) travelled to our nation's capital as a part of the AADA Legislative Conference. Continue Reading…

September 04, 2022

Christina Raj, is a training consultant, Social Activist & Founder of CIRM India a support group for Ichthyosis in India. She was born with the rare genetic skin disorder Lamellar Ichthyosis Continue Reading…

August 25, 2022

Carleen Walsh completes her PhD and studies with the help of so many. Continue Reading…

August 24, 2022

Angels come in all forms Continue Reading…

August 09, 2022

A medical student at Rutgers is trying to build awareness of a rare genetic disorder which he has. It causes a skin disease called ichthyosis Continue Reading…

July 25, 2022

Be aware of the signs of overheating and learn how to cool off Continue Reading…

July 12, 2022

SPD’s first Hall of Fame Award during its 47th Annual Meeting in Indianapolis on Sunday, July 10 Continue Reading…

July 12, 2022

This article presents a patient perspective on the importance of having psychological support for skin conditions available in the dermatological treatment pathway in the UK. Continue Reading…

June 28, 2022

Resource for deaf and hard of hearing Continue Reading…

June 20, 2022

When a red baby is born, this should be a red flag for caretakers and professionals. A red baby is mostly in danger and needs care and a diagnosis. Continue Reading…

May 17, 2022

A new scale for describing the range of human skin colours will help combat underrepresentation in research and replace subjective approaches for describing skin colour, say researchers. Continue Reading…

May 10, 2022

Body dysmorphic disorder (BDD) is characterized by perceived defects or flaws in appearance which may not be apparent to others.1 Skin diseases are singularly visible conditions2 and BDD is common. Continue Reading…

April 25, 2022

Quoin announced it has received U.S. FDA clearance to initiate clinical testing for its Investigational New Drug application for QRX003, their investigational product for Netherton Syndrome (NS). Continue Reading…

April 07, 2022

Self-improving congenital ichthyosis (SICI) is a subtype of ARCI and is diagnosed when skin condition improves remarkably (within years) after birth. Continue Reading…

April 07, 2022

How To Contribute To Ichthyosis Research Continue Reading…

April 07, 2022

The book was inspired by my personal experiences growing up with close friends and peers who had skin diseases, as my father was a dermatologist, and my experiences in dermatology. Continue Reading…

April 06, 2022

n the absence of useful assessment tools, healthcare professionals are unable to identify, triage or support the unmet needs of ichthyosis caregivers.  Continue Reading…

April 05, 2022

Dermatologist and Psychologist Continue Reading…

March 28, 2022

FIRST's CEO Christopher Boynton Attends the Academy of Dermatology Meeting in Boston, Massachusetts Continue Reading…

March 25, 2022

Tips for getting through TSA with medical supplies Continue Reading…

March 15, 2022

Clinical trial testing for Netherton Syndrome Continue Reading…

March 11, 2022

Technical enhancements in telemedicine Continue Reading…

March 09, 2022

Recent studies showed Th17 immune skewing, across the spectrum of ichthyos might broadly reduce disease severity. Continue Reading…

March 09, 2022

If I had only known then what I know now about myself and her and all of you I would have just whispered you’ll be ok. Continue Reading…

February 08, 2022

Rare Disease Month Advocacy Tools Continue Reading…

January 27, 2022

Extend sympathy to yourself Continue Reading…

January 05, 2022

Timber set out to design our Phase 2b CONTROL study evaluating an investigational topical treatment for a rare dermatologic condition called congenital ichthyosis (CI) Continue Reading…

December 06, 2021

The holidays and stress, the effect to your skin Continue Reading…

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…

November 11, 2021

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

November 08, 2021

Bathing and Lotioning distractions Continue Reading…

November 08, 2021

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

November 04, 2021

Suggestions for IEPs and students with ichthyosis Continue Reading…

November 03, 2021

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

November 03, 2021

Skin rash from pull ups. Continue Reading…

November 02, 2021

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

November 02, 2021

Addition of Bi-Functional Protein Is Complementary to Lead Asset QRX003 for Netherton Syndrome Continue Reading…

October 26, 2021

Ichthyosis & Belly button piercing teen Continue Reading…

October 25, 2021

Anxiety and ichthyosis Continue Reading…

October 22, 2021

Ichthyosis and fever and the impact to skin Continue Reading…

October 11, 2021

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

October 05, 2021

IV's and Microphones with ichthyosis Continue Reading…

October 04, 2021

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

October 01, 2021

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

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…

September 23, 2021

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

September 22, 2021

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

September 09, 2021

Saltwater and Skin Continue Reading…

September 08, 2021

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

August 30, 2021

Giving birth while having ichthyosis Continue Reading…

August 27, 2021

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

August 26, 2021

Questions about masks Continue Reading…

August 23, 2021

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

August 16, 2021

Thoughts about staring from an experienced FIRST dad Continue Reading…

August 10, 2021

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

August 10, 2021

Medication allergies and ichthyosis Continue Reading…

August 06, 2021

Tamyra discusses possible treatments for her ichthyosis vulgaris Continue Reading…

July 26, 2021

Adult sunscreen Continue Reading…

July 21, 2021

Learn about Acquired Ichthyosis Continue Reading…

July 21, 2021

Keeping warm after bathing or swimming Continue Reading…

July 15, 2021

Francine wrote this article for The Mighty Continue Reading…

July 15, 2021

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

July 01, 2021

Harlequin and Arthritis by DocWire News Continue Reading…

June 23, 2021

Specific protein replacement therapy for CDSN deficiency Continue Reading…

May 27, 2021

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

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…

May 26, 2021

Vanessa speaks about EKV during IAM Continue Reading…

May 13, 2021

Love What Matters profiles Harper's story Continue Reading…

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…

April 12, 2021

Harlequin Ichthyosis & Compartment Syndrome Continue Reading…

April 12, 2021

Netherton Guidelines Continue Reading…

March 17, 2021

Rare Diseases and Orphan Drugs Continue Reading…

March 08, 2021

Mental Health and Rare Disease Continue Reading…

March 04, 2021

Ending racism in biomedical research Continue Reading…

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 17, 2021

Tips from FIRST Members 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 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…

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 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 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…

June 12, 2020

FIRST physicians contributed to this research article. Continue Reading…