Michela Onali

Cross-cultural mediator, #GNEMyopathy and #RareDisease advocate. I dive into what is #Rare, unexpected and new to me. Share and be #FAIR

[Michela Onali @Michi_Onali]

#ProDGNEMeeting2024
🗓️19-20 April

Full list of speakers will be announced soon!

We can't wait to welcome you in beautiful #Sardinia for an exciting🌍networking event on #GNEMyopathy #RareDiseases #PatientPartnership #EJPRD #JTC2020 #OpenScience #Trasnational #Collaboration

[ProDGNE @ProDGNE]

It's #RareDiseaseDay and we want to make it special by announcing the dates and place of our final ProDGNE meeting!

📌Mark your calendar & join us in #Cagliari🇮🇹 on 19-20 April for a networking event on #GNEMyopathy, Research, #PatientPartnership & collaboration in RareDiseases

[JARDIN Joint Action @jardin_EU_JA]

❓What are the European Reference Networks?
🔗You have all 24 reference networks together on the JARDIN website.
👁️Discover them in just one click. Visit the page now!
👉https://t.co/MIMzGmeSPS
#EU4Health @EU_Commission @EU_HaDEA @eurordis @ERDERA_org @ERN_RND @ERN_eUROGEN

[Horizon Europe 🇪🇺 @HorizonEU]

Researchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazinResearchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazinResearchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazinResearchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazinResearchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazinResearchers & patients across Europe join forces to advance the fight against rare diseases. Here’s the full story ➡️ https://t.co/Mvd8wdAlYe

#ResearchImpactEU #HorizonMagazine

[Michela Onali @Michi_Onali]

Find out more in this latest @HorizonMagEU article on #RareDisease #Research #ResearchImpactEU

👉https://t.co/IEVtZrQ5xq

[Michela Onali @Michi_Onali]

How can we create a collaborative ecosystem to advance research in #RareDiseases?

We sat with @HorizonMagEU to discuss the impact of #EJPRD, the newly launched @ERDERA_org and the need for strong #PatientPartnerships in Rare Diseases

#ResearchImpactEU @eurordis #GNEMyopathy

[Horizon Magazine @HorizonMagEU]

Researchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEResearchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEResearchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEResearchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEResearchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEResearchers and patients across Europe join forces to advance the fight against #RareDiseases.

Here’s the full story ➡️ https://t.co/BkpeaLVvB8

#ResearchImpactEU

[EURORDIS-Rare Diseases Europe @eurordis]

Throwback to @Michi_Onali, our 2023 Volunteer Awardee, talking about why the Black pearl Awards mean so much to her and her ultra rare disease community!

Does somebody in your community deserve recognition? Nominate them now!
👉 https://t.co/PwHeNlhNnG

[EURORDIS-Rare Diseases Europe @eurordis]

Are you looking to learn more about rare disease research?

We have co-developed several online courses with @EJPRareDiseases to help expand your knowledge on topics such as genetic testing, health data usage, and more! �Are you looking to learn more about rare disease research?

We have co-developed several online courses with @EJPRareDiseases to help expand your knowledge on topics such as genetic testing, health data usage, and more! �Are you looking to learn more about rare disease research?

We have co-developed several online courses with @EJPRareDiseases to help expand your knowledge on topics such as genetic testing, health data usage, and more! 🎓

[ProDGNE @ProDGNE]

We are back from a fantastic #EJPRD final conference in Bari!

Thank you to the @EJPRareDiseases team and @FondazioneBenzi for hosting us in Bari!

We look forward to the next #ERDERA chapter!

#RareDiseases #GNEMyopathy #EJPRD #JTC2020

[EURORDIS-Rare Diseases Europe @eurordis]

Have you signed yet? 🖋️

Over 600 people have already signed the #ECRD2024 Open Letter to the future leaders of Europe.

🔗 Sign now on behalf of yourself or your organisation: https://t.co/6Xjf4LRX4c

[ProDGNE @ProDGNE]

Excited to be at the #EJPRD final conference next week to present:

🟣ProDGNE's experience with the @EatrisEric expert mentoring:@pertusati
🟣The impact of patient leadership & guidance in consortium + proposal development:@Michi_Onali

🔜Register by tomorrow to join us online

[ProDGNE @ProDGNE]

Thank you all for coming together for a fantastic #ProDGNEmeeting2024 in Cagliari and online!

📸Dive into some great pictures and moments from the event and stay tuned for more updates!

#GNEMyopathy #RareDisease @EJPRareDiseases #JTC2020

[織田友理子WheeLog!(ウィーログ)♡みんなでつくるバリアフリーマップ @yurik00da]

何とか乗り切りました
イタリアとオンラインで20分間発表
英語やらなきゃーといつも反省です

でもオンライン上でも語りかけてくれる先生がいて
すごく嬉しかったです

離れていても極東の力地からでも
患者としてお役に立つことがあればいいな

20 April 2024
SESSION 1:
Drug development and research efforts in GNEM across the world: USA, Korea, India
Chaired by Hanns Lochmüller, CHEO Research Institute, Canada
9:10Journey of PADM | Yuriko Oda, Representative of the Patient Association of Distal Myopathy (PADM), Japan
#ProDGNEmeeting2024
https://t.co/v7FGwQe54c

[ProDGNE @ProDGNE]

We are back for an exciting afternoon session!

#ProDGNEmeeting2024

We are delighted to have with us David Wishart from the @WishartLab to present #Metabolomics and Machine Learning for Understanding #GNEMyopathy

Wakako Yoshioka, from NCNP🇯🇵 with a talk on the national registry

[ProDGNE @ProDGNE]

#ProDGNEmeeting2024

More talks from:

Wenhua Zhu, Huashan Hospital, Fudan University 🇨🇳 presenting the mutational spectrum & preliminary natural history data of #GNEM patients

Ivailo Tournev & Teodora Chamova from Alexandrovska University hospital on #GNEM in Bulgaria🇧🇬

[ProDGNE @ProDGNE]

Great talks and discussions this morning in #Cagliari

Still a filled agenda for the day and more research in #GNEMyopathy

Join us online 👉https://t.co/dpOsHPa12e

[ProDGNE @ProDGNE]

#ProDGNEmeeting2024

Talks of the day:
👉Patient advocacy in Japan @yurik00da
👉Natural history of #GNEMyopathy and ManNAc studies at the @genome_gov Francis Rossignol & May Malicdan
👉Pilot clinical trial on Sialyllactose, SHIN Jin-Hong
👉Therapeutic options in India @wwgnem

[ProDGNE @ProDGNE]

#ProDGNEmeeting2024

Talks following coffee break:

👉Sialic acid and research on #GNEMyopathy in the @Radboudumc #CDG Expertise Center with Dirk Lefeber
👉#Biomarker studies & #proteomics: justified and unjustified demands
👉#Lipidomics studies in #GNEMyopathy @pierluigicaboni

[ProDGNE @ProDGNE]

We kicked-off the #ProDGNE International meeting on #GNEMyopathy 🚀

Today's talks:
👉#PatientPartnership in #ProDGNE & #RareDiseases @Michi_Onali
👉@EJPRareDiseases & the upcoming ERDERA @DariaJulkowska
👉The @eurordis Open Academy @RoselineFavre #patientinvolvement @iaiaraia

[ProDGNE @ProDGNE]

#ProDGNEmeeting2024
More talks of the day:

👉Advocacy for #GNEMyopathy @wwgnem
👉Introduction to #GNEMyopathy @LochmullerLab
👉Sialic acid biology and animal models, Rüdiger Horstkörte @unimedizinhalle

[ern euro_nmd @euro_nmd]

➡️Our coordinator @TeresinhaEvange will present today: "#EuropeanReferenceNetworks: a European model of cross-border collaboration in RDs diagnosis and care" at #ProDGNEmeeting2024 at 15:30 CEST!

Register here 👉https://t.co/ucguqfuOFz

[ProDGNE @ProDGNE]

The ProDGNE team is in #Cagliari and ready to welcome all patients and colleagues tomorrow!

A fantastic jam packed agenda is waiting for us 👉https://t.co/irwkOipj4Z

Register to join us online! 👉https://t.co/yOAm4u8OXi

🗓️19 April: 2:30-7pm
🗓️20 April: 9am-7pm

#GNEMyopathy