Foresight in Rare Disease Policy

Preparing a better future for people living with rare diseases. For more info [email protected]

[AIFP @aifp_cr]

Aktuálně probíhá v @SenatCZ mezinárodní konference k problematice léčiv na vzácná onemocnění. Diskusi odborníků můžete sledovat online na https://t.co/Ed9nBSqrBt #ZdravíEvropy

[Foresight in Rare Disease Policy @rare2030]

As the French Council Presidency #PFUE2022 comes to a close the Czech prepare the ground for discussions on a new #RareDisease strategy during the Czech Council Presidency #CZ2022EU @aifp_cr

[Foresight in Rare Disease Policy @rare2030]

@DrChristou @MSF @DrChristou we need support for the 2 million people living with rare diseases in Ukraine - getting meds in and getting people out. We are preparing needs assessment how can we team up at EURORDIS ? [email protected]

[Foresight in Rare Disease Policy @rare2030]

Rare Diseases Day: How the French Presidency can change the rare disease landscape https://t.co/pVseGAc3IN

[The Parliament Magazine @Parlimag]

"This cooperation on a grand scale, speeds up diagnosis, improves standards of care and informs patients"

✍️ Director General for the European Commission’s DG Health and Food Safety @SandraGallina assesses future plans to tackle rare diseases. #RareDiseaseDay 🔽 #ad

[Foresight in Rare Disease Policy @rare2030]

@save_children We’d also love to hear what wonderful things you may already be doing to help children with rare diseases in Ukraine

[Foresight in Rare Disease Policy @rare2030]

@save_children We are seeking to support the millions of people living with rare diseases in Ukraine. For example establishing a registry for surveillance and connecting people with resources and information.. could you help connect me with someone in your team for info?

[EURORDIS-Rare Diseases Europe @eurordis]

This #RareDiseaseDay, @Europe2022FR held a high-level conference to discuss European action on rare diseases. We would like to thank the EU Member States and the @Europarl_EN for your unwavering support and call on @EU_Commission to take action, today.

👉https://t.co/62h3Dlyh8x

[Foresight in Rare Disease Policy @rare2030]

@UNICEF We’re also eager to learn about what great things you may already be doing to help children with rare diseases in Ukraine .. either to continue to receive critical care and treatments or leave to neighboring countries to do so. Many thanks

[Foresight in Rare Disease Policy @rare2030]

@UNICEF We are seeking to support the millions of people living with rare diseases in Ukraine most of them children. E.g set up a registry for surveillance, connection and info.. could you help connect me with someone in your team that could help on this?

[Foresight in Rare Disease Policy @rare2030]

@UNCERF @UNOCHA @UNReliefChief @CBPFs @OCHA_Ukraine @humdata I am also eager to learn what wonderful things you may be already doing to support the millions of people with a rare disease in Ukraine

[Foresight in Rare Disease Policy @rare2030]

@UNCERF @UNOCHA @UNReliefChief @CBPFs @OCHA_Ukraine @humdata We are seeking to support the millions of people living with rare diseases in Ukraine. For example establishing a registry for surveillance and connecting people with resources and information.. could you help connect me with someone in your team to support?

[Foresight in Rare Disease Policy @rare2030]

@UNOCHA I am also eager to learn what great work you may already be doing for people living with rare diseases in Ukraine

[Foresight in Rare Disease Policy @rare2030]

@UNOCHA We are seeking to support the millions of people living with rare diseases in Ukraine. Establishing a registry for surveillance and connecting people with resources and information.. could you help connect me with someone in your team to support?

[Foresight in Rare Disease Policy @rare2030]

@Refugees We are seeking to help people living with rare diseases in Ukraine get the critical attention they need. For example set up a registry of patients for surveillance and connection. Could you please let us know who to contact in your team for advice?

[Vittoria Carraro @LucyintheskyLu]

"We will continue were the French colleagues left off." Jakub Dvoracek confirming there will be 2 events on rare, one in summer and one in autumn during the Czech Presidency. Rare 2030 reccomendations as a solid base for action.

[Frédérique Ries @Frederiqueries]

On behalf of @RenewGroup, I am standing with the 30 million people living with a rare disease in Europe.

By taking part in today’s Ministerial Conference on Research and Care Pathways I am helping step towards equity and prosperity for rare diseases.

#EUAction4Rare @Sante_Gouv

[Frédérique Ries @Frederiqueries]

#RareDiseaseDay @olivierveran «L’Europe de la santé n’est pas le supplément d’âme de l’UE. J’en veux pour preuve l’appel des patients pour un plan d’action pour les maladies rares. Je me dois de le relayer.
S’agissant d’un plan #maladiesrares je pense que nous y sommes presque.»

[EURORDIS-Rare Diseases Europe @eurordis]

And the EURORDIS Leadership Award goes to… 🥁

Dr. Anne-Sophie Lapointe! 🏆

We celebrate her dedication to advocating for rare diseases through her numerous leadership positions.

👉 https://t.co/8SiIjavJgD

[Helena Dalli @helenadalli]

Today I had an exchange with @eurordis on rare diseases, the link to vulnerability and how they can also be addressed from the angle of equality for better outcomes for Europeans.

#UnionOfEquality