Help us build a community for PAM
If you've found this website, there's a good chance that you have PAM, or that someone close to you does. That makes you part of a very small and incredibly rare community. There are currently thought to be just over 1,000 living people with PAM worldwide. Because PAM is so rare, there is still a great deal that we don't understand about the condition — and that makes research into its causes, progression and potential treatments incredibly important.
Why is the PAM Register important?
For researchers and universities, one of the biggest challenges with a rare condition is finding enough people to take part in research. By joining the PAM Register, you can help change that. The register will help build a better picture of the PAM community and, importantly, provide a way for researchers to connect with people who may be interested in taking part in future research.
When researchers and universities apply for grants and funding to study PAM or develop potential treatments, being able to demonstrate that there is a community of people who could potentially participate in research can be incredibly valuable. The more people who join, the stronger the case for research becomes. Our hope is that, over time, this could help research progress from better understanding PAM, to clinical studies and, ultimately, towards treatments that could make a real difference to people's lives.
I'm doing this because I have PAM too
This isn't just a research project to me. I have PAM myself. As I increasingly notice the impact that PAM has on my own life, I want to do something that could help move things forward — not just for me, but for everyone living with this incredibly rare condition. I also want to connect the people who are living with PAM around the world. There is something powerful about knowing that you're not alone, and that there are other people out there who understand what living with PAM can be like.
Please join the PAM Register
If you're willing to help, please complete the register. It will ask you some questions about your PAM, your experience of the condition and how it is affecting you. It will also ask whether you would be happy to be contacted about future research opportunities.
It will also ask whether you have had genetic testing. This is particularly important because understanding the genetic basis of PAM can help researchers learn more about the condition and may help identify whether other members of a family could potentially be affected. Joining the register doesn't commit you to taking part in a clinical trial or any future research. It simply allows you to indicate that you may be interested in hearing about opportunities in the future.
Stay connected
PAM may be rare, but the people living with it matter. By joining the register, sharing your experience and connecting with others, you can help create a community that researchers can find, listen to and work with. If you have PAM, please join us.