Using our website and registering for PSC Support membership
PSC Support is the UK registered charity (#1115615) dedicated to helping anyone affected by Primary Sclerosing Cholangitis (PSC). Our registered office is 7 Bluebell Way, Bamber Bridge, Lancashire, PR5 6XQ. We aim to help you be informed about PSC and its related issues and to provide access to peer support. We’re run 100% run by volunteers, totally funded from charitable donations and open to everyone.
Joining in – Membership benefits
- Access to our online communities to connect with others affected by PSC.
- Online access to our regular Newsletter - PSC News.
- Initiation to join our national meetings.
- Voting rights at AGM and other special meetings to influence PSC Support’s governance and work.
- Eligibility to volunteer to be an officer or trustee of PSC Support.
Although we hope we’ll never have need to mention them to you again, please take time to familiarise yourself with our simple policies and statements associated with the commitments made when becoming a member of PSC Support.
Respecting your privacy – Our commitment to our members
- We will limit our communication to you to be on PSC-related matters only.
- We will respect your right to privacy and will not share your contact information with any 3rd party without your explicit consent.
By registering on this web site to become a member of PSC Support and you consent to abiding by both the terms and ethos of the following conditions:
- Everyone is welcome but remember that PSC Support members have a shared interest not necessarily a shared point of view. Healthy, respectful debate and differing perspectives are welcome and encouraged.
- Don't say anything online that you wouldn't say in public. Although our facebook group and web site forum are only available to members we have no way to check out the background of the people who join so your doctors, friends, relatives, employer, etc. could possibly be members, or become members and read anything you post.
- Please do not make potentially defamatory marks against any individuals and be sensitive to other people’s feelings when you post. Reflect on whether this is an appropriate place for a comment, or if it might be better placed on your Wall or blog. When you read messages, try to understand that written word is easier to misunderstand than a regular conversation, and if something offends you, realise that it may have been inadvertent. If you feel you need to respond to something that has offended you, do not attack the person who sent it. Send a reply or direct message that lets them know, politely, that what they said bothered you, and give them a chance to clarify or apologise. This will usually solve the problem.
- Don't tout personal beliefs as fact, unless there are scientifically conducted, peer-reviewed studies to back it up. Keep in mind that new members may be starved for information. It's OK to state what works for you, but PSC is extremely variable, and it may not work for everyone (and may even be harmful to some).
We’re not doctors – We can’t give medical advice.
- Unless otherwise explicitly stated content on this website is written by PSC Support volunteers who are not medical professionals.
- If you speak or converse through any medium with a Trustee, Officer, Volunteer or member of PSC Support you acknowledge that you will not accept anything discussed to be construed as medical advice.
- We recommend that you speak to a suitable qualified medical practitioner regarding any specific medical issues or planned changes to your individual healthcare regime.
Getting tough only as a last resort – We like moderation at a minimum
At our sole judgement and discretion PSC Support reserves the right to:
- Edit/remove facebook group or web site forum posts that we judge to be potentially defamatory or incompatible with the ethos of our community.
- In extreme cases revoke an individual's membership and remove their access to www.pscsupport.org.uk
The content of our website
Unless labeled otherwise all content on this website is the intellectual property of PSC Support. If you provide submissions including but not limited to forum posts then by using this site you consent to that content becoming the intellectual property of PSC Support.
PSC Support is not responsible for the content of any external sites and resources we provide links to from this website.