Patient Organizations Meeting


This event is supported by Novartis and ISSAID.




Participants registered to the ISSAID congress are welcome to attend the patient organizations meeting – please make sure to tick the relevant box while registering.

Representatives of patient organizations should contact the organizer ( for further information on how to register.



Sunday 31 March 2019

08:30-09:00  Welcome from Organizing Committee, and Keynote speech from ISSAID
  Topics: How far that we have come in the past 20-30 years with autoinflammatory diseases.
What are the goals of ISSAID, and how patient orgs can help?
Where are the aspirations of ISSAID for the next 5-10 years?


Impact of disease on patients throughout the lifespanPresented by ISSAID doctors

Presented by ISSAID doctors


Psychosocial, work, education, peer/social life, relationships


Reproductive years/ family planning


Group discussion with all attendees, led by the speakers: “How to address unmet needs and improve access to help with these patient challenges.”


How to help patients communicate with doctors, peers, teachers, relatives, etc. about their disease, from childhood to adulthood


Empowered patients: How to explain your disease in terms for peers to understand


The “dos and don’ts” of communication with doctors: Planning for doctor visits, organizing medical info, thoughts and questions to ask, etc.


Group discussion with all attendees, led by the speakers: “What materials do patient organizations have-what works and what do pts still need?”


Coffee break

11:00-11:30 Coping skills, education and work/career support for patients


Resilience strategies, & how to seek help for psychosocial needs


Transition to adult care. Work & School accommodations


Group discussion with all attendees, led by the speakers: “Helpful resources, and what more is still needed for patients?”


Networking lunch



A Call to Action

Open forum discussion for all attendees, led by ISSAID and the organizing committee


Next Steps: How to begin to address the unmet needs discussed at the end of each morning session (A, B, C), and on this effort. Selection of the top 3 action items to address collaboratively before the next ISSAID Congress


Commitment/ Plan for when/how to tackle the 3 action items


Open discussion: How patient organizations can support ISSAID, & autoinflammatory needs in general

10 mins: Research (fundraising, directing patients to research, etc.)
10 mins: Outreach and awareness efforts that orgs can partner on with ISSAID globally:

  • Autoinflammatory Awareness Month
  • Individual disease awareness days (FMF, Behçets, CRMO) and Rare Disease Day

10 mins: Patient support group outreach, online information & social media best practices


Closing thanks and remarks



Socializing and networking

By continuing to browse this website, you accept cookies which are used to offer a personalized experience on our website, generate statistics and realize advertising or social network tracking. Find out more about our Privacy policy and how to manage them on your browser. You can change your cookie settings at any time.    

Cookie PolicyAccept