Associazione italiana di pazienti e di genitori con figli affetti da distrofia muscolare di Duchenne e Becker.
Roma_Italia
Joined February 2014
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Parent Project aps retweeted
Il progetto nazionale UILDM e @Parent_Project per garantire il pieno esercizio dei diritti civili e sociali delle persone con disabilità, in particolare del Centro e Sud Italia. Il progetto entra subito nel vivo con due laboratori sulla Vita indipendente uildm.org/blog/dis-is-me-ogn…
Parent Project aps retweeted
Explaining gene therapy isn’t easy – but it’s essential.
Francesco Saverio Tedesco from the MAGIC project shares a clear way to make it understandable for patients.
Learn more about MAGIC’s patient-centred approach:
magic-horizon.eu/about/objec…
#GeneTherapy #MAGICHorizon
Parent Project aps retweeted
#3Dicembre #Giornata internazionale delle persone con #disabilità. Tra le iniziative per promuovere i diritti riconosciuti, ma troppo spesso disattesi, quella dell’associazione Duchenne @Parent_Project per la rimozione delle barriere architettoniche.
@MariaCr80667914 #GR1
Parent Project aps retweeted
Missed our latest newsletter? It was a BIG one including conference highlights, progress and our general assembly!
Stay in the loop:
🔗 Sign up today ➡️ magic-horizon.eu/news-events…
ALT Image of a phone with the MAGIC newsletter on it, surrounded by notebooks and coffee cup
Parent Project aps retweeted
✨ What is MAGIC and why does it matter for gene therapy?
PI @SaverioTedesco shares how this multi-partner project tackles key challenges in rare neuromuscular conditions – building building tools for safer, more effective treatments.
🎥 Watch below
#GeneTherapy #RareDisease
Parent Project aps retweeted
Gene therapies could make a difference to many different conditions. 🧬
MAGIC aims to leave behind a strong framework for the development of gene therapies, which could make a difference for people with #MuscularDystrophy and other genetic conditions.
#IWD2025
ALT "By fostering collaboration across disciplines, MAGIC will leave behind not only groundbreaking discoveries but also a strong framework for future gene therapy development." Alessia Nota, ReiThera
Parent Project aps retweeted
“Together we can make a difference” – Ilaria Zito @Parent_Project
The challenges of finding effective treatments for people with muscular dystrophy won’t be solved in isolation.
MAGIC brings leading experts together to push the research forward.🤝
#IWD2025
ALT "As a consortium, we work in a fascinating and ever-changing field and we that, together, we can make a difference." Ilaria Zito, Parent Project Italy
Parent Project aps retweeted
As #InternationalWomensDay approaches, we will be highlighting the MAGICians helping accelerate the development of gene therapies for people with #MuscularDystrophy. 👩🔬
They’ll be sharing why MAGIC is important and the impact it could have.
Follow to hear more 👀
#IWD2025
Parent Project aps retweeted
MAGIC aims to develop effective treatments for people with rare #MuscularDystrophy.
These rare conditions affect the muscles and can impact walking, eating, sleeping and breathing.
By bringing together leading experts we will push research forwards, faster.🧑🔬
#RareDiseaseDay
ALT A group of members of the MAGIC team
Parent Project aps retweeted
🚫💊Da AIM @miologia un #PositionPaper per esprimere una posizione contraria alla sospensione dell’autorizzazione alla commercializzazione del farmaco per la #Duchenne ataluren.
Il mese scorso si era tenuta la conferenza dell'On. @Ileniamalavasi
osservatoriomalattierare.it/…
Parent Project aps retweeted
Day 2 of the MAGIC project General Assembly in Rome, hosted by @Parent_Project aps.
Yesterday, we explored advanced bioengineering for neuromuscular diseases, AAV strategies & muscle-specific vectors. Today, we dive into gene editing approaches for DMD, L-CMD, U-CMD & much more.
Parent Project aps retweeted
Do you want to join us? Contact us
📞+34 618 256 690
📩 [email protected]
@Parent_Project
@FederacionAsem
@RareDisordersCy
#RareDiseasesCroatia
The #ErasmusPlus project is co-funded by the #EU.
#mentoringforinclusion
Parent Project aps retweeted
Oggi si celebra la Giornata mondiale della distrofia di Duchenne per informare e attivare la società civile sulle tematiche che riguardano questa malattia rara che si manifesta in un neonato maschio ogni 5000. Scopri come aiutarci @Parent_Project > parentproject.it/world-duche…
Parent Project aps retweeted
Oggi si celebra la Giornata mondiale della distrofia di Duchenne per informare e attivare la società civile sulle tematiche che riguardano questa malattia rara che si manifesta in un neonato maschio ogni 5000. Scopri come aiutarci @Parent_Project > parentproject.it/world-duche…
Parent Project aps retweeted
Sono già diverse le #TerapieGeniche in via di sviluppo clinico per la #Duchenne, di cui una già autorizzata in US. Ma la ricerca non si ferma e nuove strategie spuntano all’orizzonte #WDAD2024 @Parent_Project @worldduchenne @DuchenneDay
🌎 🔬 In occasione del World Duchenne Awareness Day, una notizia incoraggiante sul fronte della ricerca: Dalla @IUMedSchool una nuova strategia per ripristinare la versione completa della distrofina.
👉 tinyurl.com/5232vknj
#WDAD2024 @parentproject @UILDMnazionale #7Settembre
Parent Project aps retweeted
📣 Yesterday, Ilaria Zito from @Parent_Project Italy presented the MAGIC project at the @IIM_myology Meeting in Assisi.
🤝 Here, she emphasized the importance of patient associations in bridging science and families and guiding research on Duchenne and Becker muscular dystrophy.
Parent Project aps retweeted
The Duchenne research overview has been updated on the @TREAT_NMD website treat-nmd.org/resources-and-…
Thanks to @DuchenneUK and @Parent_Project as I was able to update due to the information provided at their meetings in London and Rome!
Parent Project aps retweeted
@uniamofimronlus #UILDM e @Parent_Project che stanno combattendo per #ataluren ringraziano l'On. @FMCastaldo e il Consigliere regionale Marche #GiacomoRossi per il loro interessamento, auspicandosi che sempre più rappresentanti politici si uniscano
agenzianova.com/a/65e6f9d726…
Parent Project aps retweeted
Translarna, le associazioni chiedono il rinnovo dell’autorizzazione per il farmaco:uniamo.org/dall-italia/trans…
Insieme a @UILDMnazionale e @Parent_Project abbiamo chiesto a Commissione Europea e EMA di rivedere la decisione relativa al farmaco per la Distrofia Muscolare di Duchenne.
