UK aHUS Patients

[Lisa Barker]

At such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as much as possible to help this along.

At the moment there are over 150 aHUS patients in the UK but unfortunately we do not know all their details e.g name, e-mail etc... due to patient confidentiality which means we cannot contact them to send the relevant surveys and give them the information they need to help with this great challenge.

 

Therefore I am asking if any of you out there haven't already been in touch with anyone about the patient survey, MP letter and the e-petition could you please contact me though this forum so I can get some details from you please. 

 

Thanks again for everyone's support!

[Len Woodward]

A short update on aHUSUK:

• the Patient Voice submission will take place throughout April. 14 people will be interviewed including patients carers and family members. The final report will be reviewed by aHUSUK in early May and a presentation given to AGNSS on 14 June, the day that they will decide on their recommendation to the Minister of Health;
• the  e-petition  signatures continue to grow and now stand at over 2400;the Rar
• aHUSUK have also been asked to feedback to the UK Rare Disease Plan consultation document;
• Lisa Barker has also joined as one of the charity's trustees.

[Cheryl Biermann]

Good luck and congratulations on Lisa's inclusion as a trustee!  I'm marking my calender and will say a little prayer for this.

[Lisa Barker]

Thank you Cheryl, have already been given plenty of tasks to 'get stuck into' since becoming a trustee which is good to be helping in some way. I feel proud to be part of something that is helping patients just like me and am honoured to be given this role.