thankyou V.UK

[hamble99b]

just wanted to say thanks to John, Susan and everyone who worked so hard to help get rituximab accepted.

regards,

sandra.

[Moley1]

I would like to endorse that. In the short time since I have returned to Vasculilis UK (formly SST) I can see what an impact John and his team are having.

Today because of John's efforts I have been interviewed by the local radio about the rituximab decision and the impact on us!. Not sure when it will air but great that we have been given the opportunity to share our stories.

Thank you all so much.

[John_Mills Volunteer in reply to Moley1]

Hi Moley, that's great news, do let us know when it's on the radio. Vasculitis UK is all about teamwork, many of us working together - and we now work with the dedicated medical professionals in different ways to make it better for people with vasculitis. It's not going to happen overnight, but it's going steadily in the right direction.

All the best - John

[John_Mills Volunteer]

Hi Sandra,

The Rituximab battle was very much a joint effort, with Martin Thomas & Lisa Rayell attending and speaking at the NICE meetings, as well as me. And we were working with the vasculitis doctors who were doing their best to get it approved. We didn't quite achieve all our objectives and there are other objectives that were not even considered - such as the use of rituximab in the rarer types of non ANCA vasculitis, where there is good experience of its use, but not the evidence to back it up. So the battle goes on and we might have to have international cooperation in the

European Vasculitis Group to get sufficient hard evidence. NICE will review the new guidance in 3 years - so watch this space! All the best - John

[SandieB in reply to John_Mills]

Hi John and thnks for that and congratulations to you and your team for getting this far with Retuximab i no its been a hard battle but you have battled on and i no you will all keep doing so.

Regards

Sandra

[Griff53]

Hi

Can I also pass on a big pad on the back for all involved to get Rituximab accepted.. It's the only drug that has worked for me..

regards

Dave

[Theresak]

I would also like to add my thanks to all who campaigned to get rituximab accepted. Getting funding was always such a stressful time. So many many thanks