Workshops: Understanding how to manage this illness
Comprendre la maladie
For patients, managing this illness and treatments can have a big impact on their autonomy and daily needs. The Amylo-PEP workshops, led by Soulef Guendouz and accredited by the ARS (Regional Agency for Health), aim to help patients adapt to this and to help them get more involved in their care. This program is also supported by the French Association for Patients Against Amyloidosis.
These workshops aim to help patients prepare for the complications that amyloidosis can cause and to encourage them to play an active role in their health, in order to improve or maintain their autonomy and reduce the impact that this illness has on them, their family and their carers.
Patients can take part in these workshops once they have been admitted to hospital or they can visit our referral centre, where our coordinators will be able to help:
Patients can choose from a program of workshops once the care coordinators have assessed what they may need. Please note that this point of contact and all workshops are for French-speakers only.
Contact our Amylo-PEP coordinating team:
Tel: 01 49 81 28 16
Julie Pompougnac, Psychologist, Amylo-PEP coordinator
Steven Maupou, Nurse, Coordinator
Carole Henrion, Amyloidosis Coordinator
Isabelle Vallat, Cardiac Amyloidosis Referral Centre Secretary
Dr Soulef Guendouz, Cardiologist, Amylo-PEP Officer
Anabel Moreira, Health Care, Amyloidosis Heart Failure Unit