Sponsor
This event is supported by Novartis and ISSAID.
Registration
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 (saskyaa@hotmail.com) for further information on how to register.
Programme
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? |
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09:00-10:00 |
Impact of disease on patients throughout the lifespanPresented by ISSAID doctors |
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Presented by ISSAID doctors |
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09:00 |
Psychosocial, work, education, peer/social life, relationships |
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09:20 |
Reproductive years/ family planning |
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09:40 |
Group discussion with all attendees, led by the speakers: “How to address unmet needs and improve access to help with these patient challenges.” |
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10:00-10:45 |
How to help patients communicate with doctors, peers, teachers, relatives, etc. about their disease, from childhood to adulthood |
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10:00 |
Empowered patients: How to explain your disease in terms for peers to understand |
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10:15 |
The “dos and don’ts” of communication with doctors: Planning for doctor visits, organizing medical info, thoughts and questions to ask, etc. |
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10:30 |
Group discussion with all attendees, led by the speakers: “What materials do patient organizations have-what works and what do pts still need?” |
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10:45-11:00 |
Coffee break |
| 11:00-11:30 | Coping skills, education and work/career support for patients |
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11:00 |
Resilience strategies, & how to seek help for psychosocial needs |
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11:15 |
Transition to adult care. Work & School accommodations |
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11:30 |
Group discussion with all attendees, led by the speakers: “Helpful resources, and what more is still needed for patients?” |
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11:45-12:30 |
Networking lunch |
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12:30-13:30 |
A Call to Action |
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Open forum discussion for all attendees, led by ISSAID and the organizing committee |
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12:30 |
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 |
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12:45 |
Commitment/ Plan for when/how to tackle the 3 action items |
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13:00 |
Open discussion: How patient organizations can support ISSAID, & autoinflammatory needs in general 10 mins: Research (fundraising, directing patients to research, etc.)
10 mins: Patient support group outreach, online information & social media best practices |
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13:30-13:35 |
Closing thanks and remarks |
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13:35-14:00 |
Socializing and networking |
