PC News Brief
Vol 18, No. 3
May-Jun 2023
In the past months, our community has been actively engaged in hosting our largest PC research event of the year, networking with scientists, participating in clinical trials, and educating the world about PC.
For those of us with PC who have spent most of our lives trying to be and look “normal,” letting others know about PC – and our pain – is not easy. Case in point: Look at the Word Cloud at the end of this newsletter and you will see “embarrassing” is a prime word people use to describe their PC.
But we have a choice. We can choose to stay quiet and have no one know or care about PC because they think we are fine. Or we can raise our voices and actually do something about that pain.
So, thanks to all of you who are part of our loving AND powerful community. Because of your voices, we are letting the medical, research, and yes, the donating world know about PC. You are making a difference! Keep it up, and know your efforts are so appreciated by those who are not content to let our loved ones settle for a life with PC pain.
2023 IPCC Symposium at the ISID, Tokyo, Japan
With excellent scientific presentations and a room packed with researchers, our Annual International PC Consortium Symposium to advance research and drug development for those who suffer from PC exceeded our expectations! Because so many brilliant minds were already in Tokyo for an even larger dermatology research conference, PC Project strategically held our meeting there, too.
We were pleased with how many new and interested researchers registered for our symposium or walked in on the day of our meeting. More importantly, we were thrilled with the caliber of the presentations and the scientists who wish to collaborate and be part of our consortium now!
PC Project at the ISID
After our PC Project-hosted symposium in Toyko, we joined the larger International Societies for Investigative Dermatology Conference. With an exhibit booth and the opportunity to attend exciting and relevant presentations, the PC Project team enjoyed raising PC awareness, networking with new scientists, and collaborating with the many outstanding researchers we already know.
PC Grant Program
While PC Project has always funded credible and critical PC-related research, we have now established an official PC Research Grant Program where scientists will apply for grants within a specific timeline. This program, designed to accelerate our progress, was launched at our IPCC Symposium in May. Funding drives research, and we expect to attract new scientists and new possibilities through this plan.
GRIDD Survey
GlobalSkin, an international organization PC Project partners with, needs your help to collect data on the impact of living with skin conditions like PC. The survey only takes 10–20 minutes and will help validate the very real and difficult challenges patients like you face globally.
Many other patients with different skin diseases have already taken this survey. As this Gridd Project is gaining traction, we would love to ensure PC is represented!
You can take the survey in English, Arabic, Bengali, Simplified Chinese, Danish, Dutch, French, German, Hindi, Italian, Japanese, Portuguese, Russian, Serbian, Spanish, Swahili, or Vietnamese. Choose the language you prefer when you click on the link: globalskin.org/GRIDDStudy
Clinical Trial Event
PC patients gathered in Minneapolis, MN on the weekend of June 10, 2023, for a small clinical trial event.
One patient who attended emailed us at PC Project and wrote, “It was a very meaningful event for all who participated. I think it lifted many spirits and created many new friendships. Thank you for all the hard work and love you have given to make this happen.”
Learn more about this event on our website.
As more trials for PC treatments become available, we are sincerely grateful for patients who are able and willing to participate. There are several small trials for different potential PC treatments happening around the world right now. It’s an exciting time to be us!
PC Awareness Month
Thanks again for another wonderful PC Awareness Month in June. If you haven’t already, we invite you to explore our PC Awareness Month webpage to read and watch what others shared last month.
What we are especially impressed with the young adults and teenagers with PC who are growing up not so ashamed of their PC. They are an example to us all and tell their stories courageously.
Best Practices
Need ideas on how to best care for your PC? We invite you to explore the Managing and Care section of the website, which also links to the impressive Tips and Tools section.
With more than 2000 patients in the registry, we have learned much about how to care for PC. We share the best practices learned from our community’s dedicated medical professionals and from the best experts of all – the patients.
Words Patients Use to Describe PC
Recently we asked PCers to provide three words to describe PC. The request originated from a researcher who wanted a simple but powerful way to show the impact of PC. Below is a Word Cloud generated from the answers. THIS Word Cloud demonstrates perfectly why we do what we do! (In the next newsletter, we will share the results from the second part of the survey.)
