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
lnkd.in/dPkjSDJk
May 15, 2025 at 8:45 AM
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
lnkd.in/dPkjSDJk
📢 Breaking News! Ecuador announces co-sponsorship of the WHA Resolution on Rare Diseases.
A special thank you to our dedicated member organization Federación Ecuatoriana de Enfermedades Raras for their tireless advocacy and commitment. #Resolution4Rare#WHO#WHA#HealthforAll
A special thank you to our dedicated member organization Federación Ecuatoriana de Enfermedades Raras for their tireless advocacy and commitment. #Resolution4Rare#WHO#WHA#HealthforAll
January 31, 2025 at 11:04 AM
📢 Breaking News! Ecuador announces co-sponsorship of the WHA Resolution on Rare Diseases.
A special thank you to our dedicated member organization Federación Ecuatoriana de Enfermedades Raras for their tireless advocacy and commitment. #Resolution4Rare#WHO#WHA#HealthforAll
A special thank you to our dedicated member organization Federación Ecuatoriana de Enfermedades Raras for their tireless advocacy and commitment. #Resolution4Rare#WHO#WHA#HealthforAll
To read Rare Disease International news announcement: www.rarediseasesinternational.org/wha-resoluti...
#raredisease #Resolution4Rare
#raredisease #Resolution4Rare
April 17, 2025 at 1:46 PM
To read Rare Disease International news announcement: www.rarediseasesinternational.org/wha-resoluti...
#raredisease #Resolution4Rare
#raredisease #Resolution4Rare
🌐 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...
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...
La OMS aprueba por primera vez una resolución que reconoce las enfermedades raras como una prioridad de salud pública | FEDER
España ha liderado, junto a Egipto, esta resolución histórica respaldada por 41 países en la Asamblea Mundial de la Salud.FEDER participa como aliada estratégica en el proceso internacional que ha dad...
www.enfermedades-raras.org
May 26, 2025 at 1:51 PM
🌐 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...
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...
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...
www.rarediseasesinternational.org/wha-resoluti...
May 19, 2025 at 7:38 AM
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...
www.rarediseasesinternational.org/wha-resoluti...
Ha participado el Dr. Miquel Pons, subgerent del hospital, celebrando además la nueva resolución sobre Enfermedades Raras adoptada en la 78.ª Asamblea Mundial de la Salud #WHA78 #Resolution4rare 👉 https://www.rarediseasesinternational.org/wha-resolution-on-rare-diseases-adopted/
May 26, 2025 at 8:53 AM
Ha participado el Dr. Miquel Pons, subgerent del hospital, celebrando además la nueva resolución sobre Enfermedades Raras adoptada en la 78.ª Asamblea Mundial de la Salud #WHA78 #Resolution4rare 👉 https://www.rarediseasesinternational.org/wha-resolution-on-rare-diseases-adopted/
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.
By recognizing rare diseases as a global health priority, it will drive more investment in research, accelerate drug development, and improve access to care.
May 12, 2025 at 7:34 AM
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.
By recognizing rare diseases as a global health priority, it will drive more investment in research, accelerate drug development, and improve access to care.
🌍 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...
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...
February 11, 2025 at 1:24 PM
🌍 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...
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...
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
🎉 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
The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! 🌍✅
#WHA78 #RareDiseases #HealthForAll #Equity #UHC #Resolution4Rare
May 24, 2025 at 2:45 PM
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
📣 Our latest newsletter is out with exciting news from IF, our members and partners around the globe!
💻 Read our newsletter 👉 bit.ly/43HUEPT
📩 Subscribe to receive our news in your email 👉 bit.ly/IF-newsletter
#N4G #GDS #WHA #Resolution4Rare #IWD #SpinaBifida #Hydrocephalus #SBH #DisabilityRights
💻 Read our newsletter 👉 bit.ly/43HUEPT
📩 Subscribe to receive our news in your email 👉 bit.ly/IF-newsletter
#N4G #GDS #WHA #Resolution4Rare #IWD #SpinaBifida #Hydrocephalus #SBH #DisabilityRights
June 3, 2025 at 11:53 AM
📣 Our latest newsletter is out with exciting news from IF, our members and partners around the globe!
💻 Read our newsletter 👉 bit.ly/43HUEPT
📩 Subscribe to receive our news in your email 👉 bit.ly/IF-newsletter
#N4G #GDS #WHA #Resolution4Rare #IWD #SpinaBifida #Hydrocephalus #SBH #DisabilityRights
💻 Read our newsletter 👉 bit.ly/43HUEPT
📩 Subscribe to receive our news in your email 👉 bit.ly/IF-newsletter
#N4G #GDS #WHA #Resolution4Rare #IWD #SpinaBifida #Hydrocephalus #SBH #DisabilityRights
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
🎉 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
The Resolution on Rare Diseases has officially been adopted at the 78th World Health Assembly (WHA78)! 🌍✅
#WHA78 #RareDiseases #HealthForAll #Equity #UHC #Resolution4Rare
May 26, 2025 at 10:33 AM
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
Me uno a la iniciativa de Rare Disease International (@rarediseasesint.bsky.social) para solicitar una resolución que asegure el acceso equitativo a espacios de cuidado de la salud y adecuaciones razonables en el entorno laboral para las personas que viven con enfermedades raras. #HealthForAll #WHA
February 5, 2025 at 8:19 PM
🌍 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
🗣️ “This vote transforms hope into hard policy... across borders, disciplines and sectors,” – Daria Julkowska, #ERDERA
🔗 loom.ly/WHhT-CM #Resolution4Rare
World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration - ERDERA
On 24 May 2025, the Seventy-eighth World Health Assembly (WHA78) voted unanimously for the resolution “Rare diseases: a global health priority for equity and inclusion,” the first time the World Healt...
loom.ly
May 27, 2025 at 12:27 PM
🌍 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
🗣️ “This vote transforms hope into hard policy... across borders, disciplines and sectors,” – Daria Julkowska, #ERDERA
🔗 loom.ly/WHhT-CM #Resolution4Rare
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...
February 5, 2025 at 9:20 AM
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...
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.
May 24, 2025 at 10:12 AM
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.
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.
May 19, 2025 at 6:20 AM
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 #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
April 28, 2025 at 9:14 AM
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
Discussion on #UHC at the WHO #EB156 will continue today at 10 AM CET.
RDI's Alanna Miller will be reading our constituency statement in support of the #Resolution4Rare.
🍿 Watch live: www.who.int/about/govern...
RDI's Alanna Miller will be reading our constituency statement in support of the #Resolution4Rare.
🍿 Watch live: www.who.int/about/govern...
WHO Executive Board, 156th session
The 156th session of the WHO Executive Board take place on 3–11 February 2025.
www.who.int
February 5, 2025 at 9:11 AM
Discussion on #UHC at the WHO #EB156 will continue today at 10 AM CET.
RDI's Alanna Miller will be reading our constituency statement in support of the #Resolution4Rare.
🍿 Watch live: www.who.int/about/govern...
RDI's Alanna Miller will be reading our constituency statement in support of the #Resolution4Rare.
🍿 Watch live: www.who.int/about/govern...
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.
May 5, 2025 at 7:46 AM
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.
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
It’s time to change that: support #Resolution4Rare.
#UHC #Health4All #WHA #RareDiseases
April 22, 2025 at 8:01 AM
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
It’s time to change that: support #Resolution4Rare.
#UHC #Health4All #WHA #RareDiseases
"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...
Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts | LinkedIn
Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts
~LinkedIn Live Event Celebrating PKU Awareness Month~
May 23, 2025 at 1PM ET
Featuring Guest Creatives:
Kevin Alexander (US), Producer...
www.linkedin.com
May 23, 2025 at 11:38 AM
"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...
📢 Breaking news! The People’s Republic of China announces co-sponsorship of the WHA Resolution on Rare Diseases. There are now 15 co-sponsors of the #Resolution4Rare. Learn more about the Resolution:➡️https://www.rarediseasesinternational.org/wha-resolution/
January 29, 2025 at 10:25 AM
📢 Breaking news! The People’s Republic of China announces co-sponsorship of the WHA Resolution on Rare Diseases. There are now 15 co-sponsors of the #Resolution4Rare. Learn more about the Resolution:➡️https://www.rarediseasesinternational.org/wha-resolution/
Friday marked a turning point for the WHA Resolution on Rare Diseases and the global rare disease community. The #Resolution4Rare was formally submitted for consideration by the Executive Board. The official submission follows 3 months of intense negotiations by the Member States on the final text.
February 4, 2025 at 7:40 AM
Friday marked a turning point for the WHA Resolution on Rare Diseases and the global rare disease community. The #Resolution4Rare was formally submitted for consideration by the Executive Board. The official submission follows 3 months of intense negotiations by the Member States on the final text.
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
May 24, 2025 at 9:17 AM
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
📢Romania announces co-sponsorship of the #WHAResolutiononRareDiseases alongside 12 other Member States. Learn more about the #Resolution4Rare ➡️:thehttps://www.rarediseasesinternational.org/wha-resolution/
January 24, 2025 at 10:47 AM
📢Romania announces co-sponsorship of the #WHAResolutiononRareDiseases alongside 12 other Member States. Learn more about the #Resolution4Rare ➡️:thehttps://www.rarediseasesinternational.org/wha-resolution/