If there is anything we can help you with, please contact PC Project.
If you have a special need, please Connect With Us. The starting point for all services is participation in the patient registry, and services are provided by PC Project at no cost. If we do not have the answers, we will work with you to find those who can assist.
Following are a few examples of PC Project services (in additional to physician consultations and genetic testing):
DISABLED PARKING PERMITS
PCers around the world have obtained letters from PC Project to assist them in qualifying for disabled parking permits.
PCers may need letters to assist them in special arrangements at their work site. For example, in one case, PC Project helped a PCer gain permission to wear tennis shoes and socks (rather than stockings) at work. In another situation, PC Project helped get a classroom teacher a permanent classroom so that it wasn’t necessary to walk and change rooms several times a day.
SCHOOL ADMINISTRATORS, TEACHERS, COUNSELORS
PC Project has helped gain permission to wear sandals in winter, opt in/out of sports as needed, have ibuprofen available in the office, make accommodations in college schedules and housing, and, of course, establish that PC is not a fungal infection.
PC Project has helped PCers in several countries obtain disability status, which can mean income assistance, childcare assistance, and other benefits as needed. This is very difficult to achieve — as PC is not on the short list of approved disorders — and is determined on a case-by-case basis.
LOCAL PHYSICIAN CONSULTATIONS
PC Project often arranges for conference calls with local physicians to discuss care for PC. These conference calls have been effective to clarify actions with the local physicians who may be unfamiliar with PC.
If you are interested in finding a pediatric dermatologist in your area who may be more specialized in rare skin diseases, you may search for one via the Society for Pediatric Dermatology at https://pedsderm.net/for-patients-families/find-a-pediatric-dermatologist/.
CONNECT WITH OTHER PC PATIENTS OR PARENTS.
For those in the patient registry, PC Project hosts PC Patient Chat on Facebook where you can connect with other patients. You may also request that PC Project share your email with others in our database or request a special webmeeting to discuss any specific problem or situation.