Latest posts tagged with #Resolution4Rare on Bluesky
📣 Our latest newsletter is out with exciting news from IF, our members and partners around the globe!
💻 Read our newsletter 👉 bit.ly/43HUEPT
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#N4G #GDS #WHA #Resolution4Rare #IWD #SpinaBifida #Hydrocephalus #SBH #DisabilityRights
🌍 Historic milestone at #WHO: For the first time, #RareDiseases are a global health priority for @who.int
🗣️ “This vote transforms hope into hard policy... across borders, disciplines and sectors,” – Daria Julkowska, #ERDERA
🔗 loom.ly/WHhT-CM #Resolution4Rare
✨ Exciting news!
The #WHA #Resolution4Rare is now officially adopted!
🫶 Proud to keep advancing #equity #inclusion and #access4all with @rarediseasesint.bsky.social
👉 bit.ly/43MRV8U
#RareDiseases #SpinaBifida #Hydrocephalus #SBH #DisabilityRights #NothingAboutUsWithoutUs
🌐 Member States at #WHA78 have adopted a landmark resolution declaring #RareDiseases a global health priority.
This marks a turning point for over 300 million people worldwide—advancing diagnosis, care, inclusion, and access to treatment. #Resolution4Rare
www.enfermedades-raras.org/actualidad/n...
Retina International welcomes this step forward for our community. We thank @rarediseasesint.bsky.social for its leadership in bringing together patient reps from around the world and for ensuring that our voices are heard loud and clear at the global level. #Resolution4Rare #RareEyeDiseases #IRDs
incluye un plan estratégico global de 10 años para mejorar diagnóstico, tratamiento e inclusión. #Resolution4Rare 👇
#FEDER_ONG #NoInvisibles @csic.es @sanidad.gob.es
www.sanidad.gob.es/gabinete/not...
Huge achievement for all in the #global #raredisease community & an example that successful collaboration across borders, cultures, languages and systems, is absolutely possible if we listen & learn from each other. Well done to everyone involved! #HealthforaAll #Resolution4Rare #UHC #WHA78
Today, the first ever RDI WHA statement was delivered by Alanna Miller, Global Policy Coordinator at #WHA78. The individual NSA statement delivered by RDI gives voice to the 275 civil society organizations that have joined the Coalition in support of #Resolution4Rare.
🎉 BREAKING NEWS FROM GENEVA! 🎉
The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! 🌍✅
#WHA78 #RareDiseases #HealthForAll #Equity #UHC #Resolution4Rare
Wow! Such sad intervention from Mexico at this year's World Health Assembly using this global forum for health to advertise IMSS Bienestar instead of actually committing to improving healthcare in Mexico & supporting important initiatives like the #RareDiseases #Resolution4Rare
"Rare Disease in the Arts" is streaming live today 1PM ET (6PM BT) with 5 Storytellers on their Creative Lives - inspiration, advocacy + advice in a LinkedIn Virtual Event. Auspicious timing, as WHO #WHA78 considers #RareDisease #Resolution4Rare health care today! www.linkedin.com/events/73277...
Hoy la #WHA78 tiene la oportunidad de hacer historia con la #Resolution4Rare 🙌
Esta propuesta puede transformar la atención, investigación y visibilidad de 300 millones de personas con #EERR en todo el mundo 🌍💚💜
#RDI: rarediseasesinternational.org/wha-resoluti...
#RareDiseases #Equidad #SaludGlobal
Why support the #Resolution4Rare? Because 58% of people with rare conditions face discrimination - in schools, workplaces and even healthcare settings. The WHA Resolution is a step toward inclusion & change. #MentalHealthAwareness #FaceEqualityWeek
www.rarediseasesinternational.org/wha-resoluti...
As #WHA78 kicks off, we recognize the power and commitment of the global rare disease community, which has been working tirelessly to make the #Resolution4Rare a reality. The Resolution is a powerful step forward — a shared commitment to equity and to ensuring that no one is left behind.
We support the #Resolution4Rare to bring urgent attention to the 300M+ living with rare diseases. Early diagnosis starts with better data! www.rarediseasesinternational.org/wha-resoluti...
Without a diagnosis, it's impossible to access treatment and support. It takes 6 yrs on average to diagnose a rare condition - some never receive a diagnosis at all. We support the WHA #Resolution4Rare to make diagnosis a global health priority. What about you?
lnkd.in/dPkjSDJk
Why support the #Resolution4Rare? Because millions of PLWRD still have no treatment options.
By recognizing rare diseases as a global health priority, it will drive more investment in research, accelerate drug development, and improve access to care.
Egypt 🇪🇬 and Spain 🇪🇸 will host a side event on the #Resolution4Rare during the World Health Assembly #WHA78 on 19 May in Geneva!
RDI will be participating! See the full agenda here: lnkd.in/drb_MvkD
Attendance is by invitation only - request your spot: www.rareresolutionwha.com/confirm-your...
Rare diseases may be uncommon, but they have a profound impact. Despite medical advances, one third of children born with a rare disease today do not survive to see their fifth birthday. Early diagnosis and access to treatment can change that. That’s why we support the #Resolution4Rare.
We support #Resolution4Rare at the next World Health Assembly...Rare diseases: a global health priority for equity and inclusion" - this represents an opportunity to make a meaningful difference in the lives of those living with these conditions, to leave no one behind @rarediseasesint.bsky.social
Because 60% of people seeking a diagnosis for a rare condition remain undiagnosed, even after comprehensive investigations. We support #Resolution4Rare for the millions of PLWRD and PLWUD around the world.
#UndiagnosedDay2025 @wilhelmfoundation.bsky.social Undiagnosed Diseases Network Foundation
Why support the #Resolution4Rare? Because 5% of the world’s population will be diagnosed with a rare condition during their lifetime, and yet rare diseases are often overlooked in health policies.
It’s time to change that: support #Resolution4Rare.
#UHC #Health4All #WHA #RareDiseases
To read Rare Disease International news announcement: www.rarediseasesinternational.org/wha-resoluti...
#raredisease #Resolution4Rare
Because I know someone living with a rare disease (and so do you) I support the #Resolution4Rare. Image of people of different sizes and abilities holding hands.
Why support the #Resolution4Rare? Because rare diseases impact us all—family, friends, neighbors. Yet 300M+ people worldwide lack proper diagnosis, treatment & support.
It's time for equity & action.
Join us—urge leaders to commit to real change!
www.rarediseasesinternational.org/wha-resoluti...
📢 Call to Action – It's time for the #RAREvolution!
#WHA must adopt the resolution "Rare diseases: a global health priority for #equity and #inclusion" calling on @who.int to develop a Global Action Plan on Rare Diseases (#GAPRD).
#Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC
For the 300 million people around the world living with a rare disease, I support the #Resolution4 Rare. Text is dark purple, pink and blue. Image of a globe in the center. Background shows a gear in pink, blue and green on a dark purple background.
Why support #Resolution4Rare? Because rare diseases aren’t rare — 7,000+ conditions affect 300M people worldwide. PLWRD face unique challenges in diagnosis, treatment & care. Let’s make rare diseases a global health priority! #WHA #RareDisease #UHC #HealthForAll
📢 Support the WHA Resolution on Rare Diseases!
🌍 300M+ people live with a rare disease, yet they’re often left out of health policies. It's time to make rare diseases a global health priority!
We urge Member States to adopt the #Resolution4Rare.
🔗 Read our call to action: tinyurl.com/4wb2xwe6
🌍 A Milestone for the Rare Disease Community! 🌍
10 February marked a pivotal moment for rare diseases worldwide. The 156th WHO EB has recommended the adoption of the #Resolution4Rare to the 78th WHA in May 2025.🔗 Read our full statement here: www.rarediseasesinternational.org/wp-content/u...
At #EB156, three more Member States have joined as co-sponsors of the #Resolution4Rare! We applaud Thailand, Slovenia, and Slovakia for standing alongside 21 other member states in support of the #Resolution4Rare. Discussion is continuing today. Watch the EB live: www.who.int/about/govern...
