Reposting from mom_to_psc_teen ('14):
To those of you who haven’t heard, or are newly diagnosed, please join the patient registry. We need each and every PSC patient to participate to help the researchers find a cure. The PSC Partners Patient Registry was established in collaboration with the National Institutes of Health (NIH) The Office of Rare Diseases Research.
You can find out more here https://pscpartners.patientcrossroads.org/ including information about how your identity and private information will be de-identified before releasing anything to researchers.
It doesn’t take long - and there are very kind people who will help you if you run into any problems.
Please take the time to help! For us and for yourself!