News
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 01, 2023
FIRST members can apply for funding for skin care supplies, treatments, and/or cooling devices. 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…
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March 20, 2023
Dr. Phil Fleckman has passed away. Continue Reading…
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March 09, 2023
Despite the well-known dangers of excessive use of TCs, prescribers may be imprecise about the risks and amounts to use. Continue Reading…
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March 03, 2023
All ages and skin welcome. Featuring teachers Mui Thomas and Sacha Schenker, both with ichthyosis and trained in therapeutic and adaptive yoga. Focus will be on joint freeing and mindful movement. Continue Reading…
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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…
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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 20, 2022
Camp Discovery & Camp Wonder dates are set Continue Reading…
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December 09, 2022
Genetic deletions at Xp22.31 are associated with X linked ichthyosis and with a substantially increased risk of atrial fibrillation/flutter in males. Continue Reading…
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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…
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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 07, 2022
Terry and Robert Melton have created The Weary Fund through a generous contribution. Continue Reading…
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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…
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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…
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October 04, 2022
At present, there is no standard terminology for describing the spectrum of constitutive skin colours across human populations. Continue Reading…
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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…
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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…
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August 26, 2022
Designated Breakthrough Therapy TMB-001 Continue Reading…
August 25, 2022
Carleen Walsh completes her PhD and studies with the help of so many. Continue Reading…
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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…
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July 12, 2022
SPD’s first Hall of Fame Award during its 47th Annual Meeting in Indianapolis on Sunday, July 10 Continue Reading…
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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 21, 2022
Zoey entered the Miss South Africa contest 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…
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May 31, 2022
Phase 3 trial set to begin Continue Reading…
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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 17, 2022
Updated terms after member feedback 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 29, 2022
Company expects to launch pivotal Phase 3 ASCEND clinical trial to evaluate TMB-001 within the next 60 days 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 11, 2022
FIRST Member Abel Borg wrote this article and this poem 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…
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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…
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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
Sub-analysis of the Phase 2b CONTROL study in congenital ichthyosis demonstrates treatment success with TMB-001 regardless of subtype 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 25, 2022
FIRST recognizes that our members may sometimes have a tough time navigating through the emotional, psychological, and the logistical pressures of life associated with being affected with ichthyosis. Continue Reading…
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March 15, 2022
Clinical trial testing for Netherton Syndrome Continue Reading…
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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 14, 2022
Timber completed the Phase 2b CONTROL study evaluating TMB-001 in moderate to severe congenital ichthyosis (CI) in September 2021 Continue Reading…
February 08, 2022
Rare Disease Month Advocacy Tools Continue Reading…
January 28, 2022
Quarterly Ichthyosis Literature Review Continue Reading…
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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…
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December 10, 2021
Always hot or always cold. Temperature regulation. Continue Reading…
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December 07, 2021
Super hydrating face cream Continue Reading…
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December 07, 2021
Humidifiers and ichthyosis Continue Reading…
December 06, 2021
The holidays and stress, the effect to your skin Continue Reading…
November 23, 2021
One thing you wish you knew about ichthyosis from the very beginning? Continue Reading…
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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 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…
November 11, 2021
Words have the ability to make a person laugh or to fall in love. Words can hurt or heal. Continue Reading…
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November 08, 2021
Bathing and Lotioning distractions Continue Reading…
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November 08, 2021
Q: Do those with ichthyosis tend to need more sleep than average? Continue Reading…
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November 04, 2021
Suggestions for IEPs and students with ichthyosis Continue Reading…
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November 03, 2021
Other peoples reactions to your or your child's appearance Continue Reading…
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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…
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November 02, 2021
Flexibility became an immediate need for sponsors, CROs, clinical sites, and patients. Continue Reading…
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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 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…
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October 04, 2021
Timber Pharmaceuticals (NYSE:TMBR) presents results from Phase 2a study Continue Reading…
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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 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 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 06, 2021
Tamyra discusses possible treatments for her ichthyosis vulgaris 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 14, 2021
How to handle staring when your child has ichthyosis Continue Reading…
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July 01, 2021
Harlequin and Arthritis by DocWire News Continue Reading…
June 28, 2021
Quarterly Literature Review FIRST's MSAB Continue Reading…
June 24, 2021
Ichthyosis and diaper rash from FIRST's private FB group Continue Reading…
June 23, 2021
Specific protein replacement therapy for CDSN deficiency Continue Reading…
June 10, 2021
You are invited to send in a photo for our upcoming children’s book on ichthyosis! Continue Reading…
June 08, 2021
Beiersdorf announces a long term partnership with The Foundation for Ichthyosis & Related Skin Types, Inc. 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 18, 2021
FIRST and Beiersdorf are partnering to host this four session series for affected members ages 16-26. Continue Reading…
May 11, 2021
A recipient of the Diya & Aliya fund sent this note to thank the donors who fund it. 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 26, 2021
NORD's Advocacy Tool Kit Continue Reading…
March 24, 2021
Breastfeeding and other symptoms along with ichthyosis 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 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 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
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…
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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 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 signi cant 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 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 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…
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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…
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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 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…
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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…
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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…
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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…
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June 12, 2020
FIRST physicians contributed to this research article. Continue Reading…
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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…
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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…
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May 14, 2020
During Ichthyosis Awareness Month, Rick Guidotti interviewed FIRST member Bailey Pretak live on Facebook 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…
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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…
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April 03, 2020
This site provides resources for anxiety and your mental health in a global climate of uncertainty. Continue Reading…
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April 02, 2020
This large study provides a lot of new information about ichthyosis, but genotype only partly predicts phenotype. Continue Reading…
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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 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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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…
