📣 We're getting excited for the first-ever PC Project-sponsored research session at #ESDR2025!
Researchers and physicians join us in Antwerp, Belgium on Saturday, September 13, from 10–11 AM for a landmark session exploring how multi-omics analyses are guiding targeted therapies in skin disease. 🧬
This milestone session will showcase how cutting-edge research in Pachyonychia Congenita is shaping the future of treatment for rare skin disorders.
#EndThePain #RareDisease #PainfulPPK #Pachyonychia #PCProject
Angular cheilitis, or sores at the corner of the mouth, are another feature of PC. These come and go and are yet another symptom that can cause discomfort and embarrassment for patients.
#Pachyonychia#RareDisease#Pain
🔬 At #SIDSanDiego25, we’re showcasing groundbreaking skin research that shapes the future of #dermatology. Be part of the science that transforms patient care and advances our broader understanding of health.
🔗 Secure your spot: https://t.co/6uRT6KaM7p
Director of the Nat'l Institute of Child Health & Human Development (NICHD) was summarily dismissed yesterday. Here's your reminder that birth defects kill twice as many American kids as cancer but there is no St. Jude's for birth defects. Only the NICHD.
https://t.co/cJhg31BNWA
Call to Action:
Show the White house what 30 million looks like with rare disease! Send a photo of yourself labeled with your name, age, and rare disease to President Trump at the white house.
One statement: “Protect NIH Funding for Rare Disease.”
To: President Donald Trump @realDonaldTrump@DOGE@elonmusk@NIH@POTUS@RobertfKenedyjr
The White House
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500
Every voice matters—let's make rare disease a priority! #protectNIHrarefunding
Excellent science awaits at the 21st IPCC Symposium. Register today to hear Professor Nanes and all the other speakers. Please join our meeting on May 7th along with our traditional networking dinner the night before. All the details are here: https://t.co/1uoAzctRWg
#Pachyonychia #StopPCPain #SIDSanDiego2025
On Valentine’s day, 15 Assistant Professors at NIH who had started their research labs in the last 2 years were fired. Their scientific expertise was built over 10-12 years of training, most if not all of which was supported by NIH. The start up funds for their laboratories were
Please, everyone, speak out with Senator Durbin against the indiscriminate attacks on NIH And biomedical research. Loss of US contributions to science advances will doom its chances of being “Great again”
IC study sections still cannot be scheduled, and even these 50 study sections are not likely to be held until well into April at the earliest. Meanwhile scored grants from last fall and the few that took place Jan/Feb cant be approved at councils. THIS IS STILL A CRISIS!!!
Skin disease caused by mutations in the Desmoplakin or DSP gene is known as DSP-palmoplantar epidermal differentiation disorder (DSP-pEDD), or Striate palmoplantar keratoderma 2.
We currently have only 5 cases of DSP-pEDD in the PC registry, so we are still learning about this disease. However, our understanding continues to grow as we collect more data. Without genetic testing, it can be difficult to distinguish the painful calluses of DSP-pEDD from those of PC-pEDDs
See more photos here: https://t.co/HxQGMfH2ou
*Photos courtesy of the International PC Research Registry*
#RareDisease #RareDERM, #RareDiseaseDay #MySkinIsRare #GlobalSkin
Please join us in congratulating our very own Dr. Ben Nanes on joining UTSW's Disease-Oriented Clinical Scholars (DOCS) Program! This program supports research excellence at @UTSWMedCenter.
Learn about Dr. Nanes' research: https://t.co/UJlNPpMgjW
#DermTwitter#Dermatology
Some happy news. Pleased to see our paper showing how afadin strengthens cytoskeletal engagement by the cadherin-catenin cell adhesion complex out in @ScienceAdvances : https://t.co/PMwJdcXscT
@DOGE rare disease needs your support! We are 30 million Americans. 1 out of 10. 95% have no FDA approved treatment. No label no coverage. Unprofitable, underserved on the back burner. We are more than heart disease and diabetes combined. NIH, CMS, FDA forgets us easily. Please don’t let us slip through the cracks. We need funding. 10,000 different diseases is hard to keep track #raredisease maybe now/today we will be heard and matter!
If you are an undergraduate student looking for a graduate program come to our table at the Career and Education fair #bps2025 to learn about the wide range of career opportunities and graduate programs Penn State College of Medicine offers!
If you are here in LA for the Biophysical Society meeting consider attending the Emergency Town hall to discuss the impact of U.S. policies on biophysics research and what we all can do about it.
@PDA_PhD That's one approach to recruitment. Another would be to stand shoulder to shoulder with your US-based colleagues and show support for the system that helped bring you to your well-deserved current success.
This approach to suddenly cutting @NIH grant indirect costs will cause chaos and harm biomedical research and researchers in hospitals, schools and institutes nationwide. A sane government would never do this.
Impact of NIH funding in Georgia:
NIH AWARDS FUNDING: $780 M
JOBS SUPPORTED: 11,816
ECONOMIC ACTIVITY SUPPORTED: $2.18 B
Bio Industry Impact in the State:
Jobs: 37,031
Businesses: 3,284
Cutting NIH indirects will kill jobs and cause a recession. https://t.co/SGxtjfXuIe