#rarediseaseday — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseaseday, aggregated by home.social.
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The #EU4Health Joint Action JARDIN is supporting the integration of European Reference Networks into national healthcare systems, further advancing the fight against rare diseases by bringing together multinational expertise.
The #EU4Health Joint Action JARDIN is supporting the integ...
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https://nitter.net/EU_HaDEA/status/2027700320650887402#m -
Today is #RareDiseaseDay.
Did you know that 300 million people worldwide live with a rare disease? Yet, the development of therapies for rare diseases continues to face persistent challenges.
Find out how #HorizonEU projects unlock treatment discoveries: https://hadea.ec.europa.eu/news/rare-disease-day-2026-discover-horizon-europe-projects-advancing-research-and-innovation-rare-2026-02-28_en
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https://nitter.net/EU_HaDEA/status/2027670110203514923#m -
“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”
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#icd11jetzt / #RareDiseaseDay
Tagesgabe. Ein persönliches Foto.
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Mehr Infos im Blog:
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https://kopfmahlen.blogspot.com/2025/06/startseite-icd-11-petition-bundestag.html
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#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️
Synthesis of the endogenous no... -
It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness
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28.02.2026
#RareDiseaseDay
#ShowYourStripes
#TagDerSeltenenErkrankungen
#RareDiseaseCommunity
#SeltenVereint
Eine zügige Einführung der ICD-11 würde auch hier sehr helfen! / A swift introduction of the ICD-11 would be very helpful here as well!
Info: https://kopfmahlen.blogspot.com/2025/06/startseite-icd-11-petition-bundestag.html -
Today is Rare Disease Day.
I've got two of those. :catjam:
First is familial hypercholesterolemia. This is not your run--of-the-mill hypercholesterolemia. No. This cannot be just treated with diet and exercise. Even the statins aren't great at treating it. The state of the art is a PCSK9 inhibitor. This, this does wonders.
Then, there's the PCNS lymphoma. Lymphomas are already considered rare. The PCNS form is even rarer. I'm over 5 years in remission and doing fine.
May we eradicate all diseases, from the commonest to the rarest.
#RareDiseaseDay2026 #RareDiseaseDay #hypercholesterolemia #FamilialHypercholesterolemia #PCSK9Inhibitor #lymphoma #cancer #PCNSLymphoma #CancerSurvivor #HeartAttackSurvivor
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Today is Rare Disease Day.
I've got two of those. :catjam:
First is familial hypercholesterolemia. This is not your run--of-the-mill hypercholesterolemia. No. This cannot be just treated with diet and exercise. Even the statins aren't great at treating it. The state of the art is a PCSK9 inhibitor. This, this does wonders.
Then, there's the PCNS lymphoma. Lymphomas are already considered rare. The PCNS form is even rarer. I'm over 5 years in remission and doing fine.
May we eradicate all diseases, from the commonest to the rarest.
#RareDiseaseDay2026 #RareDiseaseDay #hypercholesterolemia #FamilialHypercholesterolemia #PCSK9Inhibitor #lymphoma #cancer #PCNSLymphoma #CancerSurvivor #HeartAttackSurvivor
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Today is Rare Disease Day.
I've got two of those. :catjam:
First is familial hypercholesterolemia. This is not your run--of-the-mill hypercholesterolemia. No. This cannot be just treated with diet and exercise. Even the statins aren't great at treating it. The state of the art is a PCSK9 inhibitor. This, this does wonders.
Then, there's the PCNS lymphoma. Lymphomas are already considered rare. The PCNS form is even rarer. I'm over 5 years in remission and doing fine.
May we eradicate all diseases, from the commonest to the rarest.
#RareDiseaseDay2026 #RareDiseaseDay #hypercholesterolemia #FamilialHypercholesterolemia #PCSK9Inhibitor #lymphoma #cancer #PCNSLymphoma #CancerSurvivor #HeartAttackSurvivor
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Today is Rare Disease Day.
I've got two of those. :catjam:
First is familial hypercholesterolemia. This is not your run--of-the-mill hypercholesterolemia. No. This cannot be just treated with diet and exercise. Even the statins aren't great at treating it. The state of the art is a PCSK9 inhibitor. This, this does wonders.
Then, there's the PCNS lymphoma. Lymphomas are already considered rare. The PCNS form is even rarer. I'm over 5 years in remission and doing fine.
May we eradicate all diseases, from the commonest to the rarest.
#RareDiseaseDay2026 #RareDiseaseDay #hypercholesterolemia #FamilialHypercholesterolemia #PCSK9Inhibitor #lymphoma #cancer #PCNSLymphoma #CancerSurvivor #HeartAttackSurvivor
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Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
Heute ist Tag der seltenen Erkrankungen
Rare Disease Day #RareDiseaseDay
#TagDerSeltenenErkrankungen siehe Elke Overhage Blog Unsichtbar, aber lebensgefährlich Warum wir jeden Tag um Verständnis kämpfen #elkeoverhage
https://nrw.social/@elkeoverhage/116051677789950093 -
"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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"Viele Betroffene wechseln mehrfach Arzt und Ärztin, erhalten widersprüchliche Einschätzungen oder nur Verdachtsdiagnosen. Laut Rosenberger berichten außerdem insbesondere Frauen, mit ihren Beschwerden nicht ernst genommen zu werden."
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Today is Rare Disease Day💜.
Let’s raise awareness, support families and celebrate the strength of every child and parent affected by rare conditions.
Together, our voices can make a difference. ✨#RareDiseaseDay #BabyYumYum #AwarenessMatters #FamilySupport #ChildHealth #ParentingCommunity #BYYCommunity
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Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
-
Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
#RareDiseaseDay: In der EU leben bis zu 36 Mio. Menschen mit einer seltenen Erkrankung. Das Paul-Ehrlich-Institut trägt mit seiner Expertise in Regulation & Forschung dazu bei, dass innovative Therapien sicher entwickelt und zugelassen werden können.
👉 https://www.pei.de/DE/newsroom/hp-meldungen/2026/260227-tag-der-seltenen-erkrankungen.html
#TagDerSeltenenErkrankungen -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
28. Februar 2026
Tag der seltenen Erkrankungen -
Erfahre mehr und engagiere dich! -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
Selten ist nicht selten: Bis zu 10.000 seltene Erkrankungen sind bekannt. Für Anästhesieteams heißt das oft fehlende Routine und erhöhte Risiken. #OrphanAnesthesia der #DGAI bietet >230 Empfehlungen für mehr Patientensicherheit. #RareDiseaseDay
https://nachrichten.idw-online.de/2026/02/27/tag-der-seltenen-erkrankungen-dgai-datenbank-orphananesthesia-staerkt-weltweit-die-patientensicherheit-bei-narkosen -
On #RareDiseaseDay, we spoke with Prof. Sangiorgi, Chair of the ERN Coordinators Group, about how the European Reference Networks (ERNs) are advancing rare disease care by connecting experts across Europe:
https://hadea.ec.europa.eu/news/rare-disease-day-depth-look-how-european-reference-networks-erns-are-tackling-rare-diseases-2025-02-28_en#EU4Health #RareDiseaseDay2025
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https://nitter.privacydev.net/EU_HaDEA/status/1895405873780130229#m -
On #RareDiseaseDay, learn more about EU-funded research projects like INVENTS and E-Rare-3 and their impactful work in advancing rare disease research and treatment:
https://hadea.ec.europa.eu/news/rare-disease-day-horizon-projects-invents-and-e-rare-3-2025-02-28_en
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https://nitter.privacydev.net/EU_HaDEA/status/1895428747467395105#m -
Am 28.2. Ist #TagDerSeltenenErkrankungen Durch den auf #SelteneErkrankungen aufmerksam gemacht werden soll. Ich habe das #EhlersDanlosSyndrom das auch unter die seltenen Erkrankungen fällt. Mein Weg zur Diagnose war -Wie bei vielen Betroffenen sehr lang- #RareDisease #RareDiseaseDay
