ISSAID Advocacy Meeting 2023

Watch the recording of the patient advocacy meeting held in Toronto in May 2023.

Programme

08:00 - 08:40 Session 1: What to expect at a medical congress for new attendees

08:00 Welcome from ISSAID leaders and the patient organisation committee

Chris Kinchlea (CA), Karen Durrant (CA) & Fatma Dedeoglu (US)

08:05  Introduction to the ISSAID 2023 congress: What to expect during presentations

Karen Durrant (CA)

08:15  Understanding scientific data, testing methods in slides or posters: A patient perspective of their first scientific conference

Seth Durrant (CA)

08:30               Q&A

 

08:40 - 09:15 Session 2: Addressing global unmet needs for autoinflammatory patients

08:40 Presentations and discussion on global challenges: Access to genetic testing, medication and biologics

Moderated by Fatma Dedeoglu (CA)

            Turkey: Seza Ozen (TR) (recorded talk)

Middle East (Iran): Kosar Asnaashari (IR) (recorded talk)

Africa: Kate Webb (ZA) & Chris Scott (ZA) (recorded talk)

Asia: Elizabeth Ang (SG) (recorded talk)

India: Deepti Suri (IN)

South America: Cecilia Poli (CL) (recorded talk)

Ukraine and Eastern Europe: Yuriy Stepanovskiy (UA)

09:00               Group discussion and Q&A

 

09:15 - 09:45 Coffee Break

 

09:45 - 10:40 Session 3: Managing psychosocial needs with chronic illness challenges

09:45 Patients perspectives on living with a systemic autoinflammatory disease:

Impact on quality of life (recorded talk)

Mariana Marques

09:55 As a researcher, patient and advocate for relapsing polychondritis: The discovery and treatment of VEXAS syndrome, including managing the psychosocial challenges and coping with a rare disease (recorded talk)

Marcela Ferrada (US)

10:15 Patient/caregiver experiences that have led them to advocacy

Ronny Bacharach: US SJIA parent/caregiver-Boston, MA (recorded talk)

Ian Stedman: CAPS patient/parent: Cassie +Friends & Canadian Autoinflammatory Network

Chris Kinchlea: uSAID/MAS-associated parent: Canadian CAPS Network

10:30 Group discussion and Q&A

 

10:40 - 11:20 Session 4: A time to reflect: Narrative medicine workshop for patients, caregivers and healthcare professionals

10:40 Sharing thoughts and narrative writing from this session by attendees

Karen Gold (CA) & Chris Kinchlea (CA)

11:20 - 12:00 Session 5: Moving forward together for ISSAID Collaboration 

11:20 Addressing new needs for 2023 onwards with an ISSAID leader panel

ISSAID leaders

Recording