Fragile X International
Inizia oggi pomeriggio il meeting annuale del Network Europeo che proprio in questa occasione si trasforma in un’associazioiine vera e propria che prende il nome di Fragile X International – FXI e avrà sede legale in Belgio.
Ecco l’agenda della tre giorni, dal 5 al 7 novembre 2021, che si terrà in presenza a Breslavia in Polonia, e anche on line per tutti coloro che non sono riusciti a organizzare la proria presenza.
Chairs
Joanna Kulisiak-Kaźmierczak, Rodzina Fra X
Aleksandra Mianowana
Jörg Richstein, Interessengemeinschaft Fragiles-X e.V.
Location
Meeting place: “Barbara” room, Świdnicka 8 B (Culture Zone)
https://www.google.com/maps?q=51.1077019,17.032726
Hotel: Korona Hotel Wroclaw, Market Square
https://koronahotel.com.pl/en/
Address: ul. Oławska 2, 50-123 Wrocław, Poland
Covid Travel Information
Given the dynamic development of the situation, final Covid information will be provided 14 days before the meeting. Current information can be found on the government website: https://www.gov.pl/web/coronavirus
venerdì 5 novembre 2021
3.00 pm Meet at the hotel entrance
3.20 pm Sightseeing, walk ends at the meeting room
4.45 pm Lighting of lighthouse lantern by lighthouse keeper
5.30 pm Talk including Q&A:
Prof. Jolanta Wierzba (Centre for Rare Diseases Gdańsk) online “Cooperation of the Rare Diseases Center at the Clinic of the Medical University of Gdańsk with organisations of rare diseases patients: associations and foundations”.
Meeting place: “Barbara” room, Świdnicka 8 B (Culture Zone)
https://www.google.com/maps?q=51.1077019,17.032726
6.15 pm Walk back to hotel
7.00 pm Meet in Restaurant “Karczma Lwowska”, Rynek 4 , Wrocław.
http://www.lwowska.com.pl/galeria.html
sabato 6 novembre 2021
9.00 am Drive to the Diagnostic and Therapeutic Centre of Rare Diseases Centrum diagnostyczno – terapeutyczne chorób rzadkich potrafiepomoc.org.pl
9.30 am Welcome, Meeting overview — Joanna and Aleksandra
9.35 am „Speaker’s Corner“ — Aleksandra
● Short personal introduction — All
● Reports from the member associations
● Current situation, in particular:
○ How did you manage to get through Corona?
○ How did Corona change your work?
○ Biggest problems in difficult times and best solutions (approx. 10 minutes per group)
10.45 am Coffee break
11.00 am “Patient”-centred care Part 1 — Jörg
● What are our MAJOR goals for people with FX and their families?
12:30 pm Lunch
1.45 pm “Patient”-centred care Part 2 — Jörg
● What role should/can research play?
● What kind of projects do we want, and push/support?
● What kind of projects should we avoid, or not support?
3.00 pm Coffee break
3.20 pm Fragile X International — Françoise and Brendan
● Current situation/status
● Next steps and further planning
5.00 pm Short coffee break
5.15 pm How to find funding: Ideas exchange — All
6.30 pm End of Day 1, return to hotel
7.25 pm Meeting at the hotel entrance, walking to the restaurant
7.30 pm Dinner in restaurant “Spiż”, Ratusz 2, Wrocław http://spiz.pl/wroclaw/#
domenica 7 novembre 2021
9.10 am Meet at hotel entrance, walk to conference room przejdź się – Przejście Dialogu (wcrs.wroclaw.pl)
9.20 am Overview of day 2 — Aleksandra
9.35 am Implementing professional family support: Experiences — Kirsten & Pete
● Helplines
● Visits in families and institutions
● Organisation
● Successes and challenges
10.45 am Coffee break
11.00 am Removing »Mental Retardation« in FMR1/FMRP — Kirsten
11.20 am Successful organisation of independent excursions for people with Fragile X — Joanna
12:01 pm Miscellaneous
12:25 pm Announcement next meeting
12.30 pm End of meeting
1.00 pm Optional lunch in restaurant “Pod złotym psem” Rynek 41, Wrocław
https://zlotypies.com/
Per informazioni
info@xfragile.net