🔊The Together for Rare Diseases Policy Asks are now live! As a multi-stakeholder group, we advocate for a new model to unlock ERN and industry collaboration for the benefit of people living with a rare disease. Read them here: together4rd.eu/policy-asks/ #together4rare

ERICA's Innovative Expert Working Group suggests to promote the #collaboration with industry on drug development. This is aligned with the vision of the Together For Rare Diseases' partners (industry, ERNs and patient organisations). Want to learn more? 👉together4rd.eu/

"When it comes to ERN and industry collaboration, it's unclear where that's allowed due to the current Board of Member States (BoMS) guidance.We need to work with the BoMS [..] to leverage the opportunity registries represent for early diagnosis"@VictorMaertens1 @EUCOPE #NRDS2023

Hello from Stockholm 🇸🇪! Together4RD is at this year's Nordic Rare Disease Summit, where we will be talking at 13.05 about early diagnosis and the role of registries. Stay tuned for more updates - and if you're also attending, come and say hello 👋

Victor Maertens, @EUCOPE's Government Affairs Director, added that sharing expertise and knowledge can accelerate the path towards innovation.

ERN and Healthcare advisor at @eurordis, @mattbolzjohn, explained his vision for partnerships between industry and ERNs that focus on access and expertise, going beyond just data sharing, and said that patient care must always be the main goal. Join here: shorturl.at/pwxT1

Coordinator of the ERN CG, @ARZIMANOGLOUAL1, outlined that there are 2 options going forward: to keep counting on treatments from the US and Japan, or to become main actors in the field of RD treatments. For the latter, we need to collaborate with industry and share ERN expertise

In Together4RD's webinar on the proposed European Action Plan for Rare Diseases, Yann Le Cam @yann_eurordis highlights the example of @EORTC as a research infrastructure in the cancer field that we should be looking to replicate in rare diseases. To join: shorturl.at/pwxT1

💥 Happening today!  🕰 Tune in at 15:00 CET for Together for Rare Diseases' webinar on public-private partnerships within the proposed European Action Plan for Rare Diseases  🔬   ⏩ There is still time to register and join us: together4rd.eu/event/public-…

❗ Last call to join❗  📅 Tomorrow, on 21 March, the Together for Rare Diseases webinar on public-private partnerships within the proposed European Action Plan for Rare Diseases is taking place. 🕰 15:00-17:00 CET  ➡ Register here : together4rd.eu/event/public-…

📆 Together4RD's Steering Group Chair, @SheelaUpadhyaya, shares why you should join Together4RD's webinar on public-private partnerships within the proposed European Action Plan for #RareDiseases. 🕰 21 March, 15:00-17:00 CET (online)  👉 Register here: shorturl.at/pwxT1

For #RareDiseaseDay, the Chair of Together4RD's Steering Group, @SheelaUpadhyaya , outlines some of the activities Together4RD has in store for 2023. The initiative hopes to drive change in the areas of unmet medical need through public-private collaboration #together4rare

To mark #RareDiseaseDay2023, Together4RD's MEP Champion @KnotekOndrej states the importance of an EU-wide approach to unlock solutions for people living with a rare disease. #together4rare

We are honoured to count @eurordis @mattbolzjohn as a member of T4RD's Steering Group. He outlines why collaboration is the 🔑 to unlock solutions to unmet need in #RareDiseases. #RareDiseaseDay2023 #together4rare

Thank you to one of Together4RD's MEP Champions, @Frederiqueries, for the continued support and advocacy!

This #RareDiseaseDay2023, Victoria Hedley, Rare Disease Policy Manager at Newcastle University, explains how she believes Together4RD can change the #RareDiseases ecosystem, and why she is supporting our work 👇 #together4rare

MEP @Kympouropoulos is a Champion for Together4RD, and the wider #RareDisease community. He reminds us of the importance of coming together to unlock better #patient care. #RareDiseaseDay2023 #together4rare

Ahead of #rarediseaseday2023, Together4RD MEP Champion @Frederiqueries explains why initiatives working at the EU-level, like T4RD, can bring change for people living with a rare disease.  Join the community this February 28 and show your support for #RareDisease #Patients

Together4RD is proud to support the International Conference on Rare Diseases 2023 @RareDiseasesGr. Our Steering Group Chair, Sheela Upadhyaya, will moderate a discussion on 'Research and Clinical Trials as Part of Care'. 📆 1 March, Online 👉 Register: lnkd.in/eGZtacUG