Take part in a user-testing workshop for a new website around clinical trials.

[Paul_Howard]

Sense about Science is currently organising

a user-testing workshop on a new website around stem cell therapy clinical trials, and they would like someone from our community to join them on the day.

It will be on Tuesday 4th September from 1pm to 3.30pm in their office at 14A, Clerkenwell Green, Clerkenwell, London. Lunch will be provided and they can cover travel expenses.

Here is some further background on the project;

University of Oxford, University College London and University of Manchester are developing a website that will host a database of stem cell clinical trials, as well as host resources to help patients make decisions about clinical trials. We really want to design this with the patient's needs in mind.

We want to make sure it's a website that's easy to navigate, and easy for the patients to use and help them make decisions on whether or not a clinical trial is good or bad. You would provide really great input to help us create a resource that will be helpful and useful to patients.

If you are interested in taking part, please email Nick Redman at [e-mail] for more information.

[New47]

No totally mixed up and messed up by EVERY Consultant, Doctor , GP and Dental Hospital I have ever been to in 71 years. That IS the truth Paul. Due to total lack of knowled of both Lupus and worse Ehlers-Danlos, I have done all the research myself. I thought I was going to finally get some help from the Eastman. The Consultant I saw was very kind, seemed to understand, I thought good at long last. No back came the most stupid letter I have ever read. I now have Von Willebrand (I did apologise to him over that.) It fitted my bleeding problems but I gather I don't have Von Willebrand. I remember he suggested I ask my father. As he died in 1982 and I told him at the time, he was going to get help for implants I really do have pEDS from a small child through teens. Married at 21 1) baby killed GP error 2) cot death 3) has psoriasis 4) Ehlers-Danlos 5) despite an Amniocentesis he has Klinfelters. I am now an invalid, far too many unnecessary sergaries and despairing of any help with my mouth. I was only diagnosed in 2001 then it was Sjögren's which I don't have now it's not pEDS which he agreed I do have it's only type III with von Willebrand! As Prof P. Hughes said you would have made an astonishing Rheumatologist, I thought I wonder if he doesn't understand how complicated I am. His letter came back I think reading this ladies dental history many years ago she had Lupus then (true) but now has Sjögren's. No I sill have Lupus I am negative for Sjögren's and APS! I am now without a Consultant and I can't afford to see my dentist he is private only. I give up!

[New47]

I need help to be understood, most certainly help with my mouth (the cause was a local rheumatologist who was looking for( Sjögren's which I don't have!) He took me off MTX and all my teeth retroclined. Now I have a grade 2 overbite damaging my tongue. No help with my other Lupus problems either.