Rirosz

A ritka betegségekkel élőknek számos rendkívüli, de közös nehézséggel kell szembenézniük. #rarediseasehun #rirosz

[Rirosz @rirosz]

Emlékeztetőül újra itt a már szétküldött hír 😊:
https://t.co/HIWc1bfJnG

[EUCOPE @EUCOPE]

📢We're very proud to be partnering with @eurordis on the upcoming ECRD on 15 & 16 May 2024, and it is fully hybrid for the first time!

💡This is an opportunity to shape goal-driven #RareDisease policies of the future!

🔗Register now! https://t.co/xAKQCeY85X

[EU One Health @EU_Health]

🇪🇺#RareDiseases in the EU: Joint Action shaping the future of #ERNs
🔴Join Commissioner @SKyriakidesEU, @SandraGallina and @EU_EESC colleagues as we kick off Joint Action @jardin_EU_JA now.
Web-stream available here: https://t.co/O7gDMuvyPs
#HealthUnion

[EURORDIS-Rare Diseases Europe @eurordis]

Kicking off this morning with an eye-opening session on ageing with a rare disease! #EMM2023

As members of our rare disease community are living longer and longer, we must address the new challenges they are facing and ensure that they remain part of the conversation!

[EURORDIS-Rare Diseases Europe @eurordis]

👫 Today is European Patients' Rights Day! 🧑‍🤝‍🧑

70% of people living with a rare disease do not feel well informed about their social rights.

They feel uninformed about the financial aid available and the relevant social services that can help them.

[EURORDIS-Rare Diseases Europe @eurordis]

Integrated and holistic care is essential for people living with a rare disease, and their families.

Register to learn more about good practices in integrated care. Our board member, @DanDorica, will be speaking at this event!

📅 April 19th

👉 https://t.co/hs3Tl1h9Yo

[ERN-ITHACA @ERNIthaca]

Prof Alain Verloes inaugurating the ERN ITHACA plenary board meeting 👏

[ERN-ITHACA @ERNIthaca]

📢 EuroNDD WORKSHOP, Amsterdam, April 20-21, 2023: The deadline to submit your abstract has been extended to November 30, 2022.
To know more about the event: https://t.co/FoplefIYB2

[Yann Le Cam @yann_eurordis]

We want to have 3 to 5 times more new therapies approved per year, 3 to 5 times cheaper than today by 2025.

And so, we need a structured European cooperation framework for fair prices & sustainable healthcare budgets.

📍Expert conference on rare diseases, Prague @EU2022_CZ

[EURORDIS-Rare Diseases Europe @eurordis]

The @EJPRareDiseases has launched the Innovation Management Toolbox (IMT)🛠️!

The IMT helps reduce uncertainty in academic translational research, providing researchers with self-help resources specific to their needs.

👉 Learn more: https://t.co/E0RUOE4SGL

[European Patients' Forum @eupatientsforum]

NEW SURVEY✍🏽 share your Experiences with #PatientInvolvement in #HTA in Europe.

The survey aims to better understand how #patients are involved in HTA currently, & how to do it better in the future.

Survey in 🇬🇧🇮🇹 🇩🇪🇫🇷🇪🇸🇵🇱
https://t.co/0bTXViHima

[European Patients' Forum @eupatientsforum]

🆕An interesting piece on the new @EU_Commission #EHDS proposal.

@ArturOlesch interviewed Ioana-Maria Gligor and Andrzej Rys from @EU_Health on how the European Health Data Space will work.

Read it here⤵️
https://t.co/BjTLt2mrNN

[Rirosz @rirosz]

European Patients' Rights Day: Championing civic participation in health https://t.co/O4uGfg7v6R

[EURORDIS-Rare Diseases Europe @eurordis]

🙌 Calling all stakeholders of the rare disease community!
Want to be part of international discussions shaping the future of rare disease policies in Europe, and build a network of connections from across the community?
🚨Register now at https://t.co/vqA83LMxWa

[Daniel de Vicente @Danidevic]

Attending to #EurordisWinterSchool
Learning about Scientific Innovation and Translational Research, but there is also a little time for funny faces. 😂
@eurordis #raredisease

[Rirosz @rirosz]

EU calls for stronger cooperation to fight rare diseases https://t.co/K66tnfbEKw

[Beacon for Rare Diseases @RareBeacon]

NEW

@AlexionPharma's "Inspired By" #ChildrenBook series is designed to help #Families talk about #RareDiseases w/ their #Children

Rachel Pegram lives w/ myasthenia gravis (#gMG) & wrote "Klara’s Talent" about a mommy koala w/ gMG & her daughter Klara

👉https://t.co/90gKrETsdf

[EURORDIS-Rare Diseases Europe @eurordis]

Share Rare Diseases International's infographic of life with a rare disease, and help raise awareness and understanding on the challenges of a rare disease throughout a lifetime: https://t.co/Ruh6tDnWkk @rarediseasesint

[Rirosz @rirosz]

Ritkanap után interjú a Klubrádióban https://t.co/H8xqyxu38u @YouTube által