Agenda
Friday February 17
14:00
Registration
Hall
15:00
Parent Project meets the new families
Orange 1
Ezio Magnano - Ilaria Zito - Emanuela Giulitti - Tiziana D’Auria - Cristina Bella, Parent Project aps
Parallel Sessions (Italian only)
17:00
I’m here too. Being a sibling of a DMD/BMD patient
Orange 2
Marica Pugliese - Laura Gentile
Bianca Ragona - Giacomo Buccella
17:00
What we eat matters. Nutritional aspects in DMD and BMD
EFESO
Simona Bertoli
17:00
When complexity increases. DMD/BMD and related issues
Merida
Paolo Alfieri - Francesca Cumbo
17:00
Integrating and learning: school integration
Pola
Giancarlo Onger
17:00
School devices and technology
Spalato
Fabrizio Corradi - Sara Casaretta
Saturday February 18
08:45
A Special welcome
Leptis Magna
09:30
Taking caregivers at heart
Leptis Magna
This round table talks about the experience of being a caregiver, emphasizing the bureaucratic, psychosocial and experiential aspects, through the intervention of experts and direct testimonies.
Tiziana D’Auria - Parent Project aps
Carlo Giacobini - Società Cooperativa sociale Esplicando
Giada Perinel - Parent Project aps
Testimonies from families: Jacopo Verardo - Daniela Gallo - Alberto Di Grazia - Cettina Alì
11:00
Presentation of the European “Renoir” project
Leptis Magna
Silvia Brunelli - Università degli Studi Milan- Bicocca
11.10
Coffee break
11.30
Improving muscle health, opposing inflammation and fibrosis
Leptis Magna
Gloria Antonini - Parent Project aps
Michela Catteruccia – Ospedale Pediatrico Bambino Gesù di Roma
Emilio Albamonte – Centro Clinico NeMO di Milano
Q&A with:
Italfarmaco,
Edgewise Therapeutics,
Cumberland,
Antisense Therapeutics,
Guglieri per Studio FOR-DMD
Santhera Pharmaceuticals,
Fibrogen
11.30
PARALLEL SESSION (Italian only):
The path of preimplantation genetic diagnosis when planning a pregnancy for carriers
Emanuela Giulitti - Parent Project aps
Ilaria Zito - Parent Project aps
Daniela Zuccarello – Ospedale Universitario di Padova, Network italiano PGT (N.I.D.O.)
Andrea Gallinelli – AUSL di Ferrara
Marina Forte – IVI Roma
13:00
Poster Session
Galleria Expo
13:00
Lunch Break
14.00
Dystrophin restoration:
mutation-specific strategies
Leptis Magna
14:00
Clinical trials in Becker muscular
dystrophy
Fernanda De Angelis - Parent Project aps
Claudio Bruno - Istituto G. Gaslini di Genova
Q&A with:
- Bello per ReveraGen & Santhera,
Edgewise,
Italfarmaco
Emergency card in Becker muscular dystrophy
Fabrizio Racca - Ospedale SS. Antonio e Biagio e Cesare Arrigo di Alessandria
Q&A
15:30
Presentation of the European
“Grow-DMD” project
Leptis Magna
Isabella Moroni - Istituto Neurologico C. Besta di Milano
15:40
Coffee break
16:00
The rehabilitation path, from diagnosis to adulthood
Leptis Magna
This round table addresses the topic of the rehabilitation process from the beginning of the project, through its construction and in the subsequent steps of the pathology, analyzing the different rehabilitation approaches through the intervention of technicians and direct testimonies
Emanuela Giulitti - Parent Project
Anna Lia Frongia - Fondazione UILDM di Roma- Fondazione Policlinico Universitario Agostino Gemelli
Lavinia Fanelli - Fondazione Policlinico Universitario Agostino Gemelli
Cristina Bella - Parent Project
Lucia Borgna - Oplà Studio di Neuroriabilitazione di Roma
Francesca Cumbo - Ospedale Pediatrico Bambino Gesù di Roma
Testimonies from families: Daniela Argilli - Maria Carmela Campana
11.30
Affectivity and sexuality: comparing two worlds
Pat Moeschen - divulgatore
18:00
Preventing and managing the emergencies in Duchenne/Becker
Leptis Magna
Filippo Buccella - Parent Project aps
Luca Bello - Ospedale Universitario di Padova: Emergenze e steroidi
Maria Grazia D’Angelo – IRCCS E. Medea Bosisio-Parini di Lecco: Emergenze nelle fratture
Rachele Adorisio – Ospedale Pediatrico Bambino Gesù di Roma: Emergenze cardiache
Fabrizio Racca – Ospedale SS. Antonio e Biagio e Cesare Arrigo di Alessandria: Emergenze respiratorie ed EC
Angelo Villano – Policlinico Gemelli di Roma: progetti telecardiologia e progetto monitoraggio cardiorespiratorio
Q&A
18:00
Discussion group on the theme of affectivity and sexuality
Open to young adult patients only
Pat Moeschen - divulgatore
19:30
Poster awards
Leptis Magna
20:30
Dinner
Sunday February 19
09:00
Gene Therapy in Duchenne muscular dystrophy
Leptis Mahna
Fernanda De Angelis - Parent Project aps
Eugenio Mercuri - Policlinico Gemelli di Roma
Giacomo Comi – Policlinico di Milano
Q&A with:
Pfizer,
Solid Biosciences,
Roche,
RegenXbio
10:30
Clinical trials: a conscious participation between doubts and opportunities
Leptis Magna
This session aims at addressing the aspects that most characterize the choice to participate in a clinical trial. Different points of view will be explored with the different actors involved.
Marica Pugliese - Parent Project aps
Marika Pane - Centro Clinico Nemo Roma
Francesca Magri - Policlinico Milano
Anna Petruzza - Parent Project aps
Testimonies from families: Alberto Bottaro - Debora Grandinetti - Matteo Tosetti
10:30
Parallel Session: Laws, rights and bureaucracy (Italian only)
Parallel Session
Carlo Giacobini - Società Cooperativa sociale Esplicando
12:00
Lunch box
12:30
Strategies in preclinical phase: opportunities and considerations
Leptis Magna
Annemieke Aartsma-Rus - Università di Leiden
Q&A
12:30
Parallel Session: Sports and disability
Pergamo
Valeria Catarraso - Parent Project aps
Carmen Rocca Sileo - Parent Project aps
Vincenzo Santucci - Consigliere Federale della FIB (federazione italiana boccia paralimpica)
Nino Diana - ASH Baskin Taranto Affiliazione con CSI centro sportivo Italiano
Francesco G. Manfredi - Neuro Ortopedia Ospedale Giovanni XXIII Bari
Melchiorre Ragona - ASD Albalonga Wheelchair Hockey
Testimonies from families: Samuele Ragona - Luca Montevecchi - Gabriele Zendron - Stefano Dorgia
14:00
Close
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