ISSAID 2019 Patient Organizations Meeting 10th International Congress 2019 FMF and Systemic Autoiflammatory Diseases

Eventi Nazionali ed Internazionali
Data: Domenica 31 Marzo 2019 - Mercoledì 3 Aprile 2019

Luogo: Centro Congressi - Porto antico

International Society of Systemtic Auto inflammatory Diseases
10th International Congress

ISSAID 2019 Patient Organizations Meeting Planning Committee

Karen Durrant RN, BSN
President of the Autoinflammatory Alliance

Saskya Angevare
Board member ENCA/patient advocate for KAISZ and the Autoinflammatory Alliance

Gabriele Bona
President of Associazione per le Malattie Reumatiche Infantili (AMRI)

Paolo Calveri
President of Associazione Italiana Febbri Periodiche (Sindromi Autoinfiammatorie) (AIFP)

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 ( Questo indirizzo email è protetto dagli spambots. E' necessario abilitare JavaScript per vederlo. ) 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?

09:00-10:00

Impact of disease on patients throughout the lifespanPresented by ISSAID doctors

Presented by ISSAID doctors

09:00

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

09:20

Reproductive years/ family planning

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.”

10:00-10:45

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

10:00

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

10:15

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

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?”

10:45-11:00

Coffee break

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

11:00

Resilience strategies, & how to seek help for psychosocial needs

11:15

Transition to adult care. Work & School accommodations

11:30

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

11:45-12:30

Networking lunch

   

12:30-13:30

A Call to Action

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

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

12:45

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

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: 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

13:30-13:35

Closing thanks and remarks

   

13:35-14:00

Socializing and networking

 

 

 

 

Altre date


  • Da Domenica 31 Marzo 2019 a Mercoledì 3 Aprile 2019

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