News & Events
Keeping up to date in the world of PC
Pachyonychia Congenita News
Sol-Gel Phase 1 Update
Erlotinib ointment 3.5% and 5% were investigated by Sol-Gel on healthy volunteers in maximal use condition. Following 28 days of…
Coalition of Skin Diseases Video features PC
https://youtu.be/iQXLdXTN0Yk We are grateful to Executive Director, Janice Schwartz, for going outside of her comfort zone to be filmed while…
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An Open Letter to Palvella
A Message of Gratitude and Hope from Jack Padovano, PC Project Board Chair Dear Wes and the entire Palvella Team,…
Update on Rapamycin Clinical Trial
On July 20th, 2023, our industry partner, Palvella Therapeutics, shared topline results from the Phase 3 study of QTORIN™ 3.9%…
Ask Me Anything – Live with Amit
We are grateful to PCer, Amit Parikh, for sharing his experiences on an Instagram and Facebook Live held Thursday, June…
GRIDD
You are invited to participate in ground-breaking research that is being conducted by the International Alliance for Dermatology Patient Organizations…
Now Accepting Grant Applications
PC Project is pleased to support projects related to PC-specific research with $50,000-$100,000 grants. Deadline is August 31, 2023.
PC Project at ISID 2023
PC Project attended the first International Societies for investigative Dermatology Meeting in Japan, Tokyo in May 2023. This was an…
Three Words to Describe PC
Please list in this form online three words that describe what PC means to you and how you will feel…
Small PC Clinical Trial Event
PC patients gathered in Minneapolis, MN on the weekend of June 10, 2023, for a small clinical trial event. Thanks…
PC Awareness – June 2023
Every June, those of us living with Pachyonychia Congenita (PC) – plus our families and friends who love us -…
PCers Needed to Answer 4 Questions
2023 Voice of the Patient Update We’ve detected that Javascript is not enabled. It is required for an optimal survey…
Camp Discovery
Every summer, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of Camp Discovery — a camp designed…
CSD on the Hill 2023
PC Project joined with other skin disease organizations – all members of the Coalition of Skin Diseases (CSD) to advocate…
Coalition of Skin Diseases Meeting
Gathering to learn from and help other patient advocacy groups PC Project attended the Coalition of Skin Diseases Development Day…
UK Study to Evaluate the Safety & Effectiveness of KM001, a potential treatment for PC
Kamari Pharma is happy to announce the initiation of a new study in the UK to evaluate the safety and…
Press Release on the Development of QTORIN Rapamycin for Pachyonychia Congenita
Palvella Therapeutics Announces Pipeline Update on QTORINTM 3.9% Rapamycin Anhydrous Gel (QTORINTM Rapamycin) for Serious, Rare Genetic Skin Diseases with…
Continue Reading Press Release on the Development of QTORIN Rapamycin for Pachyonychia Congenita
4L Trophy Driving for PC Awareness
Maéva et Élisa sont amies et toutes les 2 élèves vétérinaires de Toulouse. Passionnées d’aventure, elles décident de participer au…
In Loving Memory: Ira Henry Beyer Sr.
We at PC Project offer our sincerest condolences to the family of Ira Henry Beyer Sr. His son, Ira Beyer…
PCers in Clinical Trials or Studies
If you are currently in a PC clinical trial like the Palvella VAPAUS Phase 3 Trial or one of the…
Introducing Our New logo
Because PC Project was founded on love for people who suffer with the genetic skin disease PC, our very first…
#MyRareValentine
Is there someone rare and special in your life? Showcase them in our PC Project #MyRareValentine campaign! You can choose…
PC Patients Needed to Complete 3 Short Surveys
We need your help. Because of your past participation, PC researchers know they can count on you as we continue…
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Happy 20th Birthday PC Project!
This year marks our 20th year of serving PC patients! When PC Project was first started in 2003, nothing was…
The Power of Genetic Testing!
One of the greatest services PC Project provides for patients is a correct diagnosis. This is empowering and life-changing for…
2022 PC Leadership Planning Meeting
Key members of PC Project Medical and Scientific Advisory Board met in Amsterdam on September 28, 2022 for a robust…
Amy Paller, PC MSAB Member, receives high award
Dr. Amy Paller received the Society for Pediatric Dermatology’s (SPD) inaugural SPD Hall of Fame award during the 47th Annual…
Continue Reading Amy Paller, PC MSAB Member, receives high award
VAPAUS Phase 3 Clinical Trial for PC
As of October 31, 2022, the trial is now fully enrolled. Results are expected summer of 2023. Thanks to all…
PC Giving Tuesday #Worst2First4PC
Celebrated on the Tuesday following the US Thanksgiving and entering its ninth year, #GivingTuesday is a global day of charitable…
VALO-2 – Extension Study Recruitment
If you were a VALO study participant, are you interested in participating in the extension study? If you participated in…
June 2020 – PC Awareness Month
How will you join the PC community in sharing information about PC with family, friends and others for June PC…
STRONGER THAN PC
June 2019 PC Awareness Campaign What makes us strong? Our community of more than 1,000 individuals living with PC, loved…
PC LOVE BUILDERS
Love builders are those who are donate every month. 2019 PC Love Builders Challenge Results Wow, thank you PC Community!…
FDA grants Fast Track Designation for PC Treatment
Because of you, the work towards effective treatments for PC continues. Please enjoy the following email and press release we…
Continue Reading FDA grants Fast Track Designation for PC Treatment
MedPharm Expands Partnership with Palvella
MedPharm Ltd have announced the expansion of their partnership with Palvella Therapeutics, Inc., a Philadelphia-based biopharmaceutical company focused on developing…
Palvella Therapeutics Appoints Rare Disease Senior Executive Elaine J. Heron, PhD to Board of Directors
“Pachyonychia congenita (PC) is a life-altering genetic disease which dramatically limits patients’ ability to ambulate and perform everyday functional activities,”…
Short Videos Needed
We need a quick video of you! The instructions are below. STEP 1: FILM with your smart phone A) film…
PC Awareness Around the World
PC Awareness Around the World – Each Year in June It is very important that every PC patient and family…
Global Genes Grant Award
PC Project has received a grant from the Global Genes organization for training up to 12 PC Peer Coaches. This initial…
