October 1, 2026 at 5:31 PM
Today I stand strong together and celebrate #RareDiseaseDay with the #RareDiseaseCommunity.
Rare Disease Day means bringing attention to Immune Thrombocytopenia (ITP) and all rare diseases, which often go unnoticed.
@ITPsupport.org.co.uk
Rare Disease Day means bringing attention to Immune Thrombocytopenia (ITP) and all rare diseases, which often go unnoticed.
@ITPsupport.org.co.uk
February 28, 2025 at 11:57 AM
Today I stand strong together and celebrate #RareDiseaseDay with the #RareDiseaseCommunity.
Rare Disease Day means bringing attention to Immune Thrombocytopenia (ITP) and all rare diseases, which often go unnoticed.
@ITPsupport.org.co.uk
Rare Disease Day means bringing attention to Immune Thrombocytopenia (ITP) and all rare diseases, which often go unnoticed.
@ITPsupport.org.co.uk
Explore the full range of angioedema treatments: https://bit.ly/3He43qS
These range from medications to home remedies. Plus, find strategies to manage and prevent swelling.
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
These range from medications to home remedies. Plus, find strategies to manage and prevent swelling.
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
October 1, 2026 at 11:31 PM
Explore the full range of angioedema treatments: https://bit.ly/3He43qS
These range from medications to home remedies. Plus, find strategies to manage and prevent swelling.
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
These range from medications to home remedies. Plus, find strategies to manage and prevent swelling.
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
Join the Discussion: https://bit.ly/4rErM6r
#CysticFibrosis #CFCommunity #CFNewsToday #Bionews #CysticFibrosisDiagnosis #RareDiseaseCommunity
#CysticFibrosis #CFCommunity #CFNewsToday #Bionews #CysticFibrosisDiagnosis #RareDiseaseCommunity
June 1, 2026 at 2:45 AM
February 20, 2026 at 9:30 PM
28 February is Rare Disease Day 💜
Young people and families affected by Huntington’s disease are part of this global community, and raising awareness helps ensure no one faces it alone.
Join us! 💙💚💗
#RareDiseaseDay #HDYO #HuntingtonsDisease #RareDiseaseCommunity
Young people and families affected by Huntington’s disease are part of this global community, and raising awareness helps ensure no one faces it alone.
Join us! 💙💚💗
#RareDiseaseDay #HDYO #HuntingtonsDisease #RareDiseaseCommunity
February 24, 2026 at 7:17 PM
28 February is Rare Disease Day 💜
Young people and families affected by Huntington’s disease are part of this global community, and raising awareness helps ensure no one faces it alone.
Join us! 💙💚💗
#RareDiseaseDay #HDYO #HuntingtonsDisease #RareDiseaseCommunity
Young people and families affected by Huntington’s disease are part of this global community, and raising awareness helps ensure no one faces it alone.
Join us! 💙💚💗
#RareDiseaseDay #HDYO #HuntingtonsDisease #RareDiseaseCommunity
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: kopfmahlen.blogspot.com/2025/06/star...
#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: kopfmahlen.blogspot.com/2025/06/star...
STARTSEITE ICD-11 / PETITION / Bundestag / WHO - PORTAL
Infoblog zur ICD-11, Gesundheit, Petition
kopfmahlen.blogspot.com
February 28, 2026 at 4:17 PM
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: kopfmahlen.blogspot.com/2025/06/star...
#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: kopfmahlen.blogspot.com/2025/06/star...
We are the new inclusive, supportive networking hub for everyone interested in rare disease research. Our patient-centred approach is turning research on its head, where we want to be part of the future of rare disease research.
Find us at: rd-rn.org
#RareDiseaseResearch #RareDiseaseCommunity
Find us at: rd-rn.org
#RareDiseaseResearch #RareDiseaseCommunity
January 23, 2025 at 1:11 PM
We are the new inclusive, supportive networking hub for everyone interested in rare disease research. Our patient-centred approach is turning research on its head, where we want to be part of the future of rare disease research.
Find us at: rd-rn.org
#RareDiseaseResearch #RareDiseaseCommunity
Find us at: rd-rn.org
#RareDiseaseResearch #RareDiseaseCommunity
Read about ALS fatigue: https://bit.ly/3WJuQQh
From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.
#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews
From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.
#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews
April 10, 2026 at 4:05 PM
Read about ALS fatigue: https://bit.ly/3WJuQQh
From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.
#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews
From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.
#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews
MG reality: https://bit.ly/4q83GyW
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
June 29, 2026 at 9:45 PM
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
July 23, 2026 at 3:34 PM
One day, I hope Netflix tells more rare disease stories. 🎬💙
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
Until then, we’ll keep sharing ours here. Connect with others living with a rare disease: https://bit.ly/3RukYe3
#RareDisease #RareDiseaseCommunity #DisabilityAwareness #ChronicIllness #RareButNotAlone
August 12 is #InternationalYouthDay! This year, we’re celebrating Simone, a dedicated #YouthPartner with #RareKidsCAN who’s making a difference in the #RareDiseaseCommunity. Discover Simone’s journey and how she became involved with our work: tinyurl.com/nhhhtchu
#LivingWithRare #PatientAdvocacy
#LivingWithRare #PatientAdvocacy
August 12, 2025 at 11:44 PM
August 12 is #InternationalYouthDay! This year, we’re celebrating Simone, a dedicated #YouthPartner with #RareKidsCAN who’s making a difference in the #RareDiseaseCommunity. Discover Simone’s journey and how she became involved with our work: tinyurl.com/nhhhtchu
#LivingWithRare #PatientAdvocacy
#LivingWithRare #PatientAdvocacy
MG reality: https://bit.ly/4q83GyW
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
March 16, 2026 at 9:45 PM
💚🩵 #𝐑𝐚𝐫𝐞𝐃𝐢𝐬𝐞𝐚𝐬𝐞𝐃𝐚𝐲 2025 🩵🩷
Every #patient deserves access to expert care and support.
Today, we celebrate collaboration—across #ERNs, patient advocates, clinicians, and the entire #RareDiseaseCommunity. When we work together, we get closer to making a real difference.
Every #patient deserves access to expert care and support.
Today, we celebrate collaboration—across #ERNs, patient advocates, clinicians, and the entire #RareDiseaseCommunity. When we work together, we get closer to making a real difference.
February 28, 2025 at 12:23 PM
💚🩵 #𝐑𝐚𝐫𝐞𝐃𝐢𝐬𝐞𝐚𝐬𝐞𝐃𝐚𝐲 2025 🩵🩷
Every #patient deserves access to expert care and support.
Today, we celebrate collaboration—across #ERNs, patient advocates, clinicians, and the entire #RareDiseaseCommunity. When we work together, we get closer to making a real difference.
Every #patient deserves access to expert care and support.
Today, we celebrate collaboration—across #ERNs, patient advocates, clinicians, and the entire #RareDiseaseCommunity. When we work together, we get closer to making a real difference.
Does Oliver’s G Tube interfere with daily life? Nope! While he sometimes “tube time” interrupts playing or exploring, every kid also has to sit down to eat. "Mealtime" just looks a bit different for Oliver. #Cystinosis #GTubeLife #RareDiseaseWarrior #RareDiseaseCommunity #RareDiseasesRareSolutions
May 3, 2025 at 8:01 PM
Does Oliver’s G Tube interfere with daily life? Nope! While he sometimes “tube time” interrupts playing or exploring, every kid also has to sit down to eat. "Mealtime" just looks a bit different for Oliver. #Cystinosis #GTubeLife #RareDiseaseWarrior #RareDiseaseCommunity #RareDiseasesRareSolutions
April 2, 2026 at 5:30 PM
MG reality: https://bit.ly/4q83GyW
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
#MyastheniaGravis #MyastheniaGravisNews #ChronicIllnessLife #RareDiseaseCommunity #MGJourney #Bionews
February 11, 2026 at 10:46 PM
Hear this MG story: https://bit.ly/4rkfT4v
#MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessLife #RareDiseaseCommunity #Bionews
#MyastheniaGravis #MyastheniaGravisNews #LivingWithMG #ChronicIllnessLife #RareDiseaseCommunity #Bionews
March 1, 2026 at 10:45 PM
December 31, 2025 at 9:30 PM
💙 Did you know?
ACIS started the 1st Zoom support group for OM in March 2020 — and it’s still going strong every Tuesday, led by amazing volunteers. 👁️✨Join us- https://us02web.zoom.us/j/780974096<a href="/hashtag/success" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#success
#ACureInSight #OcularMelanoma #SupportGroup #PatientSupport #RareDiseaseCommunity
ACIS started the 1st Zoom support group for OM in March 2020 — and it’s still going strong every Tuesday, led by amazing volunteers. 👁️✨Join us- https://us02web.zoom.us/j/780974096<a href="/hashtag/success" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#success
#ACureInSight #OcularMelanoma #SupportGroup #PatientSupport #RareDiseaseCommunity
July 20, 2026 at 2:02 PM
💙 Did you know?
ACIS started the 1st Zoom support group for OM in March 2020 — and it’s still going strong every Tuesday, led by amazing volunteers. 👁️✨Join us- https://us02web.zoom.us/j/780974096<a href="/hashtag/success" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#success
#ACureInSight #OcularMelanoma #SupportGroup #PatientSupport #RareDiseaseCommunity
ACIS started the 1st Zoom support group for OM in March 2020 — and it’s still going strong every Tuesday, led by amazing volunteers. 👁️✨Join us- https://us02web.zoom.us/j/780974096<a href="/hashtag/success" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#success
#ACureInSight #OcularMelanoma #SupportGroup #PatientSupport #RareDiseaseCommunity
Look into this: https://bit.ly/4rcwibX
#MyastheniaGravis
#MGCommunity #MyastheniaGravisNews #Bionews #RareDiseaseCommunity
#MyastheniaGravis
#MGCommunity #MyastheniaGravisNews #Bionews #RareDiseaseCommunity
November 26, 2025 at 10:02 PM
June 2, 2026 at 8:30 PM
March 30, 2026 at 8:30 PM
Manage and prevent swelling: https://bit.ly/3He43qS
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
March 7, 2026 at 12:31 AM
Manage and prevent swelling: https://bit.ly/3He43qS
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews