Patient Registry - Please join today! Repost

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 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!

1 Like

I am taking part in research with Henry Ford in Detroit as a patient with PSC and UC for many years in hopes they will find help for those in the future with this awful disease.

Janieg40, That’s great. I hope they are successful in finding something soon. I am still reeling over what this means for our eight year old daughter and her recent diagnosis. Thank you for being part of the research.

take good care