In this newsletter, you will read just a fraction of the activities happening in our strong, global community. During the past months, more than ever, we have seen evidence of what can be accomplished when people, with their unique talents and abilities, work together. Every person’s part is important – the patients who join the registry, the families and physicians who care for them, the researchers, the pharmaceutical companies, the generous donors, our PC Board and MSAB members, and all others who give in their sphere of influence.
At PC Project, we are often awed by what is being accomplished because of the outstanding and collective efforts of so many. And at the core of our efforts are the patients we love. If you have PC, or even a similar skin disease, we are here for you and we will never stop working for you until we have a Patient Celebration Meeting instead of a Patient Support Meeting!
2023 New Orleans Patient Support Meeting
On March 15-17, PC patients and their loved ones gathered together for the first in-person Patient Support Meeting since Covid-19 cancelled our 2020 meeting, along with PC physicians, researchers, and pharmaceutical representatives. We learned, we laughed, and we encouraged one another! Thank you, Palvella Therapeutics, for your help in sponsoring this uplifting meeting. Read more and see photos of the meeting on our website:
PC Patients Represented on the Hill
PC Project joined other patient organizations in the Coalition of Skin Diseases in Washington DC on April 25th to advocate and raise awareness for skin diseases like PC. The PC patient story was told over and over that day – on camera for a special film, in congressional offices, and on a panel at a congressional luncheon and briefing. Special thanks to Mike Siegel, leader of the Pediatric Dermatology Research Alliance, for teaming up with PC Project.
Special Session at AAD for PC and other PPKs
At the 2023 American Academy of Dermatology (AAD) Annual Meeting, PC and other painful conditions with PPK were featured in a special focus session “Palmoplantar keratoderma (PPK): step by step” on Saturday, March 18, 2023. To our knowledge, this is the first time rare PPKs like PC were highlighted at this prestigious meeting. Many thanks to Prof. Eli Sprecher for applying for and directing this session on our behalf.
Kamari Pharma’s Clinical Trial for PC
Kamari Pharma is happy to announce the initiation of a new study in the UK to evaluate the safety and efficacy of KM001-a new potential treatment for PC and PPPK1 patients.
Palvella Clinical Trial Update
Results of the Phase 3 Clinical Trial will be available later this summer. Many thanks to all PC patients in the US and the UK who have participated or who continue to participate in this study, the first of its kind for PC.
PCers Needed to Answer 4 Questions
We are planning to update our FDA Voice of the Patient Report from 2018 within the next few weeks to demonstrate that PC patients still need effective treatments. We know we have asked you patients to fill out a lot of surveys lately for different and very important projects. Please, will you complete another survey, this time with only four questions, about living with PC? Your participation is needed!
Click to complete survey
CSD Development Day in New Orleans
In conjunction with the AAD Annual Meeting in New Orleans, the Coalition of Skin Diseases (CSD) gathered its members on March 18 to help them learn to operate their groups more effectively. PC Project was asked to speak and share why and how our International PC Research Registry is so powerful in helping patients receive a correct diagnosis and in advancing research and drug development for our rare disease.
The American Academy of Dermatology sponsors five one-week sessions of Camp Discovery – a camp designed specifically to meet the medical needs of kids living with chronic skin conditions like PC. Provided at no cost to families, including airfare.
Board Chair Message
Jack Padovano, the chair of PC Project’s Board of Trustees, shares a short, compelling message in the video above about why he spends so many hours volunteering for PC Project and PC patients. Thank you, Jack, for your commitment to this important cause!
IPCC at ISID
At PC Project, we are busy preparing for our annual IPCC Symposium on May 10th. Skin researchers from all over the world are heading to Tokyo to attend a large conference of the International Societies of Dermatology.
With the help of our PC Steering and Research Committees, we will strategically hold our own symposium in conjunction with the larger dermatology conference. We are excited to collaborate with new researchers and discover innovative ways to help PC patients.
Patients Highlighted at Congressional Briefing
Executive Director, Janice Schwartz, spoke about PC and PC patients to US legislators and their staff during a special congressional briefing and luncheon with other patient advocacy organizations for skin diseases. Janice stressed that if each of us does what we can in our own sphere of influence, and we all work together, we will truly help patients who suffer with PC.
June is International PC Awareness Month!
Stay tuned for more information about this fun time of year and be thinking of what you can do in your part of the world to raise awareness about PC!