Wednesday, 24 February 2016

Sold Out! Join us at the national Patients' Day 2016

You are warmly invited to join us at the national Patients' Day being held on the afternoon of Wednesday 18th May 2016 at St Thomas' Hospital in London.

The cost of Patients' Day is £20 for members of the Hughes Syndrome Foundation charity, which include yourself and a guest, and £40 for non-members.

If you want to learn more about this unique opportunity and reserve your place, please visit our website and register online.

Friday, 5 February 2016

Can you help?

The European Organisation for Rare Diseases (EURORDIS) is looking for a patient to represent the community of patients and families affected by Catastrophic APS (CAPS) in a panel of experts. 

This panel of experts will be drawing up draft guidelines which will be developed into best practice treatment for those with CAPS, so it’s important that we patients have a voice there if possible. 

The requirements for the patient representative are:

• you have a good command of English 
• you have some experience of CAPS/APS 
• feel able to advise on patient views and preferences 
• are able to travel to Barcelona, Spain on Wednesday 27th April 2016 
• can dedicate a few hours to help draw up the guidelines 

However there is no need to be an expert – they need a PATIENT’S view not a doctor’s or healthcare professional. 

If you’re interested, please contact urgently Juliette Senecat, Health and Social Projects Manager at EURORDIS: / +33 1 56 53 13 64