PC Project
@PachyonychiaFighting for a Cure. Connecting and Helping Patients. Empowering Research.
Similar User
@SturgeWeber
@CureSMA
@healourskin
@HCUAmerica
@BHD_Foundation
@JaniceNSchwartz
@nnpdf
@CureMsd
@FIRST_Skin
@DTRFoundation
@cmtausa
@NTMinfo
@EdelOToole
@PCDFoundation
@congenitalhi
We invite you to follow or subscribe to PC Project's other Social Media channels: Facebook Organizational Page facebook.com/pachyonychia/ Instagram Profile instagram.com/pachyonychia/ Linkedin Company Page linkedin.com/company/pc-pro… YouTube Channel youtube.com/user/Pachyonyc…
Congratulations to Shabri Rathod, MS, CGC for sharing and talking about her award winning poster about #pachyonychia at the American Society of Human Genetics Meeting. Her poster featured the work PC Project does with Fulgent Genetics to give patients a correct diagnosis. Our…
Our executive director, Janice Schwartz, was invited to speak as part of a three day course, Genomics for Dermatology, at the Wellcome Genome Campus, UK. ow.ly/wpbk50U5GW2 #Pachyonychia #RareDisease #StopPCPain #Genomics #Genetics
Congratulations to Michael Caterina, award winner of a 2024 PC Research Grant that focuses on pain, the number one challenge for PC patients. Like all PC Project funded grants, Mike’s proposal was selected based on its scientific merit and relevance to PC. His work will further…
Publication Highlight: Celebrating 20 Years of the International Pachyonychia Congenita Consortium jidonline.org/article/S0022-… We’re proud of all that the IPCC has accomplished over the past two decades to advance research for PC and other PPKs. @PierreCoulombe8, @davidkelsell,…
Congratulations Dr. Joshua Tam, recipient of our 2024 PC Champion Research Grant! These grants (up to $100,000 each) encourage established scientists to pursue research on ongoing or emerging challenges in PC or to bring their expertise to the field of PC. Learn more about…
Plan today to join with top scientists in the rare skin disease space at our collaborative annual event! The 2025 IPCC Symposium will be held May 7, 2025 right before the SID Annual Meeting for scientists and medical professionals. Learn more: pachyonychia.org/2025-ipcc-symp……
Congratulations to @BenjaminNanes, recipient of PC Project’s Catalyst Research Grant. This type of grant, up to $50,000, is designed to support talented scientists on the path toward becoming the next generation of PC thought leaders by supporting hypothesis-driven research…
PC Project’s collaborative work with Fulgent Genetics is being represented by Shabri Rathod, MS, CGC at the American Society of Human Genetics Meeting, Nov. 5-9, 2024 in Denver, Colorado. Shabri’s submission was selected as a “Reviewers’ Choice Abstract” because reviewers scored…
Thank you for your amazing support of not only skin diseases, but rare ones like PC! #StopPCPain
#GlobalSkin recently participated in #PeDRA2024, focusing on innovative solutions to advance pediatric dermatology research. As a proud PtAC member, we engaged with members and partners, exchanging ideas to strengthen advocacy efforts for children affected by skin conditions.
#GlobalSkin recently participated in #PeDRA2024, focusing on innovative solutions to advance pediatric dermatology research. As a proud PtAC member, we engaged with members and partners, exchanging ideas to strengthen advocacy efforts for children affected by skin conditions.
We wish you a happy and safe Halloween. And always remember that at PC Project, we are working to make living with PC not quite so scary.
“Oi, sou a Luiza e tenho 9 anos. Tenho paquioniquia e não foi uma mutação espontânea. Não foi uma surpresa para a minha família pois já conhecíamos a mutação pelo fato do meu pai tê-la também. Aprendemos a lidar com a situação. Ainda na barriga da minha mãe, ela trocou muitos…
Mark your calendar & plan now to attend. Our conference will be at the Hilton San Diego Airport/Harbor Island hotel with its lovely views of the bay. Scientists & medical professionals are invited too. Registration details coming soon! Pachyonychia #StopPCPain #ItsAllAboutLove
Today is National Cat Day!! Many PCers have pets that help them through the hard days with PC. Here are a few pictures of PCers with their cats! Do you have a pet that brings you comfort and if so, comment their name! Send a picture of your pet to us at info@pachyonychia.com…
We can't help ourselves. When we travel for PC Project, if possible, we always try and connect with local patients in our registry. After the #PeDRA2024 conference, we hosted a lunch with some of our PC family members and as usual, the bonds formed quickly. At these gatherings,…
Thank you @PeDRAResearch for giving patient organizations like ours a voice and an excellent experience at #PeDRA2024. We exhibited, learned, and made important connections. Our goal was for every professional in attendance to know about PC (including the early signs of PC and…
With so many #Pachyonychia patients living for decades without a diagnosis, these findings are not surprising. The PC registry never stops growing! ##StopPCPain
Nationwide study used Danish health registries to identify a validated cohort of 14 patients with #PachyonychiaCongenita. Prevalence estimates were 2.1 per 1,000,000 residents and 3.0 per 1,000,000 live births—higher than previously reported. ja.ma/4eUA2bD
Another wonderful PC family who doesn’t let PC stop them from going on adventures! Dad and two sons refer to themselves as “The PC Boys”. They are doing all they can do to live their best life and do things any normal family would do, although as dad said, “We just do it with a…
United States Trends
- 1. Tyson 520 B posts
- 2. Karoline Leavitt 15 B posts
- 3. #wompwomp 6.718 posts
- 4. Syracuse 21,4 B posts
- 5. Kiyan 25,6 B posts
- 6. Pence 61,1 B posts
- 7. Paige 7.489 posts
- 8. Kash 106 B posts
- 9. The FBI 271 B posts
- 10. Debbie 35,4 B posts
- 11. Whoopi 116 B posts
- 12. #LetsBONK 16,4 B posts
- 13. Villanova 1.757 posts
- 14. White House Press Secretary 19,3 B posts
- 15. Dora 24,5 B posts
- 16. Shu Shu 27,3 B posts
- 17. Kyle Neptune N/A
- 18. Mike Rogers 22 B posts
- 19. Bucks County 96,1 B posts
- 20. Boiled 4.866 posts
Who to follow
-
The Sturge-Weber Foundation
@SturgeWeber -
Cure SMA
@CureSMA -
healourskin
@healourskin -
HCU Network America
@HCUAmerica -
BHD Foundation
@BHD_Foundation -
Janice Schwartz
@JaniceNSchwartz -
NNPDF
@nnpdf -
Cure MSD
@CureMsd -
FIRST
@FIRST_Skin -
Desmoid Tumor Research Foundation
@DTRFoundation -
Charcot-Marie-Tooth Association
@cmtausa -
NTM Info & Research
@NTMinfo -
Edel O'Toole
@EdelOToole -
PCD Foundation
@PCDFoundation -
CHI
@congenitalhi
Something went wrong.
Something went wrong.