PC Newsletter Mar-Apr 2024

20th IPCC Symposium Next Month in Dallas

To all researchers and physicians, please join us either in person or virtually on May 15, 2024 from 8:00 am to 12:30 pm for the 20th Annual International Pachyonychia Congenita Consortium (IPCC) Symposium, aligned with the Society for Investigative Dermatology Meeting.

Please plan to also attend the Darier Hailey-Hailey Symposium on Tuesday, May 14 from 2:00 pm to 6:30 pm.

Because our events will include a special dinner on the 14th, and breakfast and lunch on the 15th, please pre-register no later than May 8th.

Many thanks to our IPCC Symposium Supporters

2024 European Patient Support Meeting

Patients, especially those in Europe, we invite you to join us in Lisbon, Portugal for our annual Patient Support Conference, September 1-3, 2024. We are excited to gather with our PCers in Europe again.

Details about the meeting, including scholarship information and the venue are on our website. The meeting will take place at the lovely Altis Grand Hotel in the historic part of Lisbon. Please note if you wish to stay at the hotel, all rooms are non-refundable after June 1st. Also, scholarship applications for those living in Europe and nearby areas are due by June 1st.

If you are a scientist or physician attending the ESDR (European Society for Dermatology Research Meeting) we invite you to come a few days early as our guests and meet with our patients and their families. Contact PC Project at info@pachyonychia.org if you are a professional interested in attending.

Learn more about the 2024 PC Patient Support Meeting and register

Are you ready to spread the word about PC?

We are gearing up to spend all of June thinking about PC and raising awareness for our rare skin disorder. Please be thinking about ways you can participate in your area of the world.

Too many times, we tend to hide the fact that we have PC, but we will only find solutions if we raise our voices.

This year, for PC Awareness Month, we invite you to think about and implement all the ways you can tell others about PC. Maybe it’s just talking with a friend, maybe it’s organizing a fundraiser for PC research, maybe it’s a social media post (or even sharing one of PC Project’s social media posts). Whatever you do to raise awareness for people who hurt each day because of pain, it will be perfect.

Watch for more PC Awareness Month emails in the upcoming weeks. diseases.

Get ideas from what others have done in the past on our website.

Town Hall Recording Available for Viewing

If you missed the Town Hall last month, you can still watch it and listen to our experts answer questions from our patient community.

Watch the recording here.

Invest in Our Future

Did you know PC Project accepts stocks, bonds, and mutual funds. Contributing appreciated securities is just one way you can support our long term success. You can also be a monthly donor and include PC in your estate planning.

Get more details on all the ways to support PC Project.

Mom Spreads PC Awareness in the Workplace

Claudia Avella, from Spain is a mom and an active member of our international PC community. Not only did she translate one of our brochures into Spanish, she also spread awareness about PC by writing the following article for her work newsletter:

“I would like to tell you about a non-profit organization which I am deeply grateful for. I came to know PC Project in 2015, after my baby was diagnosed as a spontaneous Pachyonychia Congenita (PC) case. 

PC is a genetic, chronically debilitating disorder, characterized by disabling pain which limits walking, with thickened nails and thickened skin on the soles of the feet and palms.

Dealing with ultra-rare conditions such as PC can be terribly lonely.  On top of the actual disease, patients and families face a lack of medical knowledge which makes the task of even finding a doctor to lead the diagnostic process or treatment even more difficult.  Additionally, most people have never seen another person with PC (unless they are related), which adds to the feeling of solitude.

PC Project really came through for us, and I believe for PC patients and their families everywhere. They:

• Offer free genetic testing
• Manage the International PC Research Registry (WIRB-approved)
• Organize Patient Support Meetings: Educational gatherings where patients can meet, teach and support one another; alongside physicians, scientists and pharmaceutical representatives.
• Encourage Research and Industry partnerships, as well awarding grants to fund PC-related projects.

And they do it with such a special, human touch, that they are able to help us stay hopeful even when life gets rough.

My profound thanks to them.

For more information, please see:  https://www.pachyonychia.org/ “

Thank you, Claudia for teaching others about PC and PC Project!

PC Project Supports Patients with Painful PPK

As the International Pachyonychia Congenita Research Registry continues to grow, and because we are now offering genetic testing on a 49 gene panel, more and more patients are joining the registry who do not have PC, but have similar features to PC, namely painful palmoplantar keratoderma. Sometimes, without genetic testing it is impossible to distinguish between the various disorders.

If you have joined our registry and received a diagnosis through PC Project that is not PC, please stay with us. Our patient advocacy work includes you. And as more data is compiled about each mutation, researchers and physicians can better understand these unique and rare conditions and we will always notify you of research studies and opportunities for clinical trials.

Learn more and see our updated numbers of those in the registry without PC

All figures above are from patients who joined the PC registry thinking they might have PC and received a physician-verified genotyped diagnosis through PC Project. You can see that some have PC and some do not. But without genetic testing, we would not be able to give patients a correct diagnosis. If you have not joined the registry yet, please check it out and enroll today.