Thursday, February 29 is Rare Disease Day. It’s a time when people all over the world come together to shine a spotlight on diseases like PC that don’t get the attention they deserve.
A rare disease is defined as rare
- in the USA when it affects fewer than 200,000 people
- in Europe when it affects fewer than 1 to 2,000 people
Pachyonychia Congenita is ultra-rare, affecting an estimated 10,000 people worldwide.
Developing treatments for a rare disease can be an uphill battle. Research, testing, drug trials — these things are very expensive. If a disease doesn’t affect enough people (i.e. there’s no potential for profit), nobody with deep pockets wants to make that kind of investment.
That’s why a global event like Rare Disease Day is so important. It helps us raise awareness and reach more potential supporters.
The ONLY reason rare diseases like PC have the resources to fund research and help patients is because of generous people.
Here are just some of the things supporters are enabling PC Project to do:
- Awarding research grants and collaborating with scientists working toward a cure
- Supporting clinical trials for potential PC treatments
- Providing free genetic testing to confirm PC and other painful PPK diagnoses for patients
- Educating patients and medical professionals about PC
- Answering thousands of phone calls and emails about PC (and similar painful diseases) each year
- Growing and maintaining our free PC genetic registry, the only resource of its kind
- And so much more.
PC Project is the only organization in the world 100% focused on helping people with Pachyonychia Congenita. And with your help today, we will keep working hard to find effective treatments and a cure!
Please spread the word about PC and PC Project on Rare Disease Day and let the world know that people with PC matter! You can copy and share any of the graphics on this page and encourage your people to raise awareness and donate to help PC patients worldwide!
