Dec. 7, 2015
Posted by Lisa Sencen
- What does it mean to you personally to be a patient organization serving the rare community? It is all about love. With a disease as rare as Pachyonychia Congenita, patients feel alone and often scared. Others around them do not understand the pain that they are dealing with while trying to live a normal life. We are glad that PC Project gives our patients an organization to turn to for support, education and a way to connect with others who have the same disease and really understand their daily struggles. We have seen how having a rare disease affects each individual and are passionate about providing a community of patients, researchers and physicians that is actively fighting for a cure, connecting & helping patients, and empowering research. Together we can make a difference.
- What do you find your patient community values most from your organization serving the rare community?
- PC Website pachyonychia.org – a website specifically designed to provide education and support for Pachyonychia Congenita patients, family members and for clinical and research professionals.
- PC NewsBrief – a monthly newsletter for patients providing news and tips
- PC Patient Support Meetings – annual meetings for patients
- PC Clinical Studies – more than 40 clinical studies have been completed
- International Pachyonychia Congenita Consortium – over 150 professionals dedicated to collaborating on PC research
Those affected with Pachyonychia Congenita and their family members best express what these PC Project activities mean to them.
“My daughter found information about this project and for the first time, we had hope.”
“Today is the first day I discovered the name of the condition and am elated to find this site! I am literally brought to tears at the thought of not being alone in this. Thank you so much for starting this project. God Bless you all.”
“I have PC since I was two/three years old. But I didn’t know the name of the disease until I was 52 years old. I don’t know anyone else who has PC. I was happy and did cry when I read about the PC organization and all the people with the same pain and difficulties and all the people who want to help to find a cure.”
“It wasn’t until recently that my brother found this site and I never fully appreciated how much a bit of information can change one’s life. Suddenly we don’t have to try and explain what he has…and put up with people who belittle what he has by suggesting he simply cut them off. You have essentially given us a voice. Thank you”
“After the first night at the PSM, I went back to my room, and I was literally in tears. Seeing someone with PC, who I could relate to, was the most humbling feeling ever. It was so refreshing to actually talk to someone that truly experiences the same things that I do. I’m struggling to convey in words my emotions from the meeting, but I don’t think words can justify how I feel. I apologize, but I can assure you it was life changing. So thank you! You are truly the best!!”
- What are some of the challenges your organization has faced?
The greatest challenge is finding any effective treatment for Pachyonychia Congenita (PC). Other challenges include:
(1) although PC patients experience excruciating, constant pain from the time they begin to walk and throughout their life, PC does not cause death and, therefore, the serious nature of this disorder is often minimized
(2) even with few patients in the world (and only about 300 in the USA) we still must interest physicians and scientists, support clinical trials, provide educational outreach and other services to make a difference for patients – the same as organizations with many, many more patients
(3) with a rare disease misdiagnosis and misinformation is common so a challenge is to publish correct information based on a larger patient population
(4) focusing attention on pain as the main disabling feature of PC (rather than thickness of nails)
- What’s been your most successful awareness campaign and/or fundraising event? PC Awareness Around the World each June encourages patients and friends to conduct events in their local areas. Because we have patients in over 60 countries, there is no ‘center’ for PC fundraising. Empowering individuals has been important to expand our reach, increase awareness and bring some additional funding. Patients have successfully held a variety of events including garage sales, car wash events, dinners, donation boxes, bake sales, golf tournament, spin-a-thon, horseback ride, bicycle rides and more. One very creative idea is a grocery market that sells empty boxes for $1 and donates that money to PC research. Our biggest fundraiser was sponsored by TransDerm, a pharma partner, who sponsored a Duathalon and raised nearly $30,000 for PC research and services.
2386 East Heritage Way
Salt Lake City, UT 84109