Patient Advocacy Groups at ECE

The return to an in-person Congress at ECE 2022 allowed ESE to expand the opportunities available to Patient Advocacy Groups, in line with the increased focus on Patients through the Patient Advocacy Group Affiliated Membership scheme.  The Patient’s Voice Hub sessions, which were introduced as online presentations at e-ECE 2021, were this year hosted in person in Milan as well as being live streamed online and made available On Demand.  Alongside this, the new Patient Experience Zone – a dedicated area where delegates could meet and speak to Patient Group representatives - was introduced to the exhibition hall.

The elevated presence of Patient Groups at ECE reflects ESE’s commitment to ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and care. It also offers congress attendees – physicians – the opportunity to learn first-hand from the patient’s presence about the activities, the patient educational material and the experience provided by the patient support / advocacy groups.

Here is what some of the Patient Group representatives had to say about the activities available at ECE 2022:

"It is so important to meet with Endocrinologists, Nurse Specialists, Researchers, and the many others at ECE 2022. So often good ideas come from the conversations at such events. For patient groups one of the benefits of attending ECE 2022 is to improve our knowledge and expertise. Working in partnership with dedicated Health Care Practitioners, gives the patients the best possible care."

Arlene Smyth, Turner Syndrome Support Society

"Patient Experience at ESE has taken on a new meaning - the true Patient Experience Zone - where PAGs and advocates are seen as a true value to the event."

Sheila Khawaja, World Alliance of Pituitary Organizations (WAPO)