Survey request for PBC Update with Community Liver Alliance

[PBCCarol]

We have partnered with the Community Liver Alliance for a virtual PBC Update. Please complete the survey by Friday August 14, 2020 (the link says the 12th but it has been extended).

surveymonkey.com/r/3PZL9LT

More information on the event :

[Kellybean33]

I will take the survey

[Sona_akb]

I guess I did it but there was a problem in county name so I picked a false county name🙈

[rderezin]

I saw your request but no information about the group..so I googled them...yes they are a non profit..but have no information about..when formed..%of funds raised ..how spent...overhead etc...no published study information...if you are "partnering " with a group I would expect more information and became immediately suspect by you post and asking us to share information...

[PBCCarol in reply to rderezin]

The survey was to help determine what the patients would like to see offered. The group began based in the Pittsburgh PA area and past updates done were in person. They have decided to expand beyond that immediate area.

This is from their website:

The Community Liver Alliance (CLA), headquartered in Pittsburgh, PA., is a 501(c)(3) non-profit, community-based organization dedicated to promoting liver health and liver disease awareness, prevention, education and research. Supported by a network of patients, caregivers, healthcare professionals and community leaders, the organization conducts screenings, develops and runs educational workshops, coordinates support groups, facilitates linkage to necessary medical care, provides education for policy makers on issues related to liver health and works with community leaders and groups to raise awareness about liver disease.

They have worked with the local PBC group for years. When we choose to partner with a group for an event it is because we feel they have something to offer to PBC patients. If you are not comfortable sharing the information they requested that is your choice. We are confident those who are part of the PBC Update in the fall will be glad they participated. communityliveralliance.org/...

[Kellybean33 in reply to PBCCarol]

Can you send me the survey direct at [e-mail]. I cant find it

[Bayebaa]

done

[Panseygirl818]

Carol, sorry I am late. Is it still possible to participate in the survey? Thank you, Cecilia

[PBCCarol in reply to Panseygirl818]

No the survey was for a limited time