Via HSF/Kate Hindle
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. eurordis.org/
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: Juliette.firstname.lastname@example.org / +33 1 56 53 13 64