20th International Conference on Duchenne and Becker Muscular Dystrophy

Three intense days dedicated to Duchenne and Becker muscular dystrophy

The XX International Conference on Duchenne and Becker Muscular Dystrophy (DMD/BMD),, organized by Parent Project, will take place from Friday 17 to Sunday 19 February in Romeat the Ergife Palace Hotel.

This meeting - full of opportunities for information and scientifical updates - is finally back in presence. A large part of the international DMD and BMD community - patients, family members, volunteers, organizations, clinicians, researchers and pharmaceutical companies - will meet again.

The claim of the 2023 Conference will be Together we are the futureto represent the projection of the Duchenne and Becker community towards progress in research and in the social field, with all the strength that comes from sharing and networking. 

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Agenda

February 17
February 18
February 19

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, Parent Project aps 

Laura Gentile, Omar 

Bianca Ragona - Giacomo Buccella, Parent Project aps

17:00
What we eat matters. Nutritional aspects in DMD and BMD Efeso

Simona Bertoli, Università degli Studi di Milano 

17:00
When complexity increases. DMD/BMD and related issues Merida

Paolo Alfieri - Francesca Cumbo, Ospedale Pediatrico Bambino Gesù , Rome

17:00
Integrating and learning: school integration Pola

Giancarlo Onger, Coordinamento Nazionale Insegnanti Sostegno

17:00
School devices and technology Spalato

Fabrizio Corradi, Istituto “Leonarda Vaccari”

Saturday February 18

08:45
A Special welcome Leptis Magna
09:30
Avere a cuore chi cura:: Caregiver familiare 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

Ilaria Zito - Parent Project aps
Alessandra Ferlini - Ospedale Universitario
Sant’Anna di Ferrara
Marika Pane - Centro Clinico NeMO di
Rome

Domande e risposte con:

Sarepta Therapeutics,
Wave Lifesciences,
M. Pane per NS-Pharma

BioMarin Pharmaceutical,
Dyne Therapeutics,
Avidity Biosciences,
PepGen

14:00
Clinical trials in Becker muscular dystrophy

Fernanda De Angelis - Parent Project aps

Claudio Bruno - Istituto G. Gaslini di Genova

Q&A with:

  1. Bello per ReveraGen & Santhera,

Edgewise Therapeutics,

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

17.30
Affectivity and sexuality: comparing two worlds Leptis Magna

Pat Moeschen  - Parent Project Muscular Dystrophy 

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 Pergamo Open to young adult patients only

Pat Moeschen  - Parent Project Muscular Dystrophy

19:30
Poster awards Leptis Magna
20:30
Dinner

Sunday February 19

09:00
Gene Therapy in Duchenne muscular dystrophy Leptis Magna

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) Pergamo 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 Parallel Session

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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With the unconditional contribution of 

20th International Conference on Duchenne and Becker Muscular Dystrophy

Parent Project aps - Via Pietro de Francisci 36 - 00165 Roma
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