News & Events
NOTE - At the May 2014, International Pachyonychia Congenita Consortium (IPCC) Scientific Symposium, there was consensus that more needs to be learned about the basics of PC — beyond understanding the genetic mutation, we need to learn more about the nerves, blood vessels, sweat glands, other contributing factors that lead to PC pain, cysts and other features unique to PC which may provide additional treatment targets. PC Project was charged with organizing and carrying out the following -
1. Gather from 60 to 100 patients with genetically confirmed PC—we need patients! we need patients!
2. Identify the scientific questions that need to be answered — we are gathering these questions.
3. Identify the exams/tests/sample collection necessary to answer — we are making these lists. These may include having biopsies from the affected areas of PC feet.
4. Identify the world’s leading experts and invite them to participate — we are inviting these experts.
To meet this challenge and wiith approval from Prof. Irwin McLean, Frances Smith, Eli Sprecher, MD, Roger Kaspar and other PC leaders, we have decided to conduct this study as part of the 2014 Patient Support Meeting in Edinburgh, Scotland. After discussion with Alain Hovnanian MD, Sylvie Cierpucha and Beatrice Wannamacher, we have scheduled a second study at a separate 2014 Patient Support Meeting in Paris, France.
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Event and Meeting Archive
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2014 PC Patient Support Meeting - October 26-28, 2014
This will be held again in Edinburgh, Scotland with support from PC-UK and the University of Dundee. Patients and experts are invited to attend. Click here for DETAILED INFORMATION on the 2014 Edinburgh PSM.
(1) REGISTER to attend the 2014 PC PSM Edinburgh
(2) PAY MEETING FEES by donating to PC Project UK or by cheque. £40 for each person over 15 years of age. Waived for first time attendees.
(3) BOOK HOTEL ROOM and note PC Project/University of Dundee Meeting special rates of £70/single, £80/double.
Note: Please only book direct with the hotel and not through other special rates. The hotel meeting rate includes meals and other conference features that are not included on internet special deals. Please book your hotel room with the special attendee meeting rate by telling them you are with the PC Project/University of Dundee Meeting.
Scholarships. The meeting fees will be waived for each PCer attending their first Patient Support Meeting (and one family member.) Fees should be paid for additional family members. Also, we are arranging scholarship funding. If you need special funding assistance for travel, hotel accommodations or meeting fees, please first REGISTER for the meeting and then immediately complete the PSM Scholarship Application. If you cannot complete the forms online, please connect with us.
Second 2014 PC Patient Support Meeting Planned for Paris, France October 10-11, 2014
Location, registration, scholarship information will be posted shortly.
Clinical Trial News
Feb 2014. Fifteen patients have now completed their initial trip to the Stanford clinic and are enrolling in the six-month clinical trial for topical sirolimus under the clinical direction of Joyce Teng, MD using the topical drug manufactured by TransDerm, Inc. of Santa Cruz, CA. We are grateful to Pfizer for donation of the active drug product.
Nov 2013. PC Project is contacting patients who are part of the IPCRR registry and qualify for the clinical trial for permission to release contact information for the clinical study. Formal study enrollment and qualification will be conducted by the clinical trial staff. The clinical trial is sponsored by PC Proejct. The drug product is being provided by Pfizer. The formulation and manufacturing in topical form is being completed at TransDerm, Inc.
Oct 2013. TransDerm announced approval by both the FDA and Stanford University IRB for the topical rapamycin clinical trial for PC-K6a patients.Dr. Joyce Teng of Stanford University will conduct the trial. Fifteen patients will be enrolled in the six-month study. PC Project will be one of the sponsors of this clinical trial and is actively seeking funding partnerships. Although the active drug has been donated, other costs of approximately $500,000 are required to complete the study.
Sep 2013. TransDerm, Inc. of Santa Cruz, California has filed an application for the use of Topical Rapamycin (TD201) for the Treatment of Pachyonychia Congenita. If approved by the FDA, the clinical study will begin in the next few months. Eligible patients will be participating in the IPCRR registry and will have specific types of PC as confirmed by genetic testing results.
2014 IPCC Annual Symposium
The annual IPCC symposium will be held Tuesday, May 6, 2014 in Albuquerque, NM prior to the Society of Investigative Dermatology Annual Conference.The meeting is open to physicians and scientists who are part of the International PC Consortium or those who wish to collaborate on areas of interest on PC-related projects. Abstracts on either completed research projects or proposals for new research and studies may be submitted to PC Project by mail or email to email@example.com by January 15, 2014.
A breakfast meeting for members of the PC Project Medical and Scientific Advisory Board Members will be held Wednesday, May 7.
2015 PC Patient Support Meeting
This will be held in the USA, Dates and location will be selected in early 2014. If you are interested in hosting this event, please contact PC Project at firstname.lastname@example.org.
PC Awareness Around the World - Each Year in June
It is very important that every PC patient and family join with us to raise funds and raise awareness of PC in some way in their own communities for this annual event. Click for easy 1-2-3- How To Get Started Steps and highlights of some events (as well as an Awareness Past Event Archive).
It takes millions of dollars to carry out clinical trials, plus costs for research and patient services. Both the percentage of patients in the IPCRR and the number helping in fundraising efforts greatly matter to grant funding and sponsors.
2014 PC Awareness Events
We hope to have at least 100 events around the world for 2014 PC Awareness in June 2014. Plan your event now - large or small - and help us get these listed and publicized.
*4th Annual PC Charity Golf Tournament Crater Springs Course, Utah - 23 August 2014 Sponsored by PC Project
Click to register as a golfer or sponsor for the 2014 golf tournament.
*2014 Run-Bike-Run Duathlon, Santa Cruz, CAPatient Support Meeting - June 2014 Sponsored by TransDerm, Inc.
Plan your event now and let us list it here --