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
July 25, 2025 at 11:31 PM
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CRF Research Spotlight: ASO Therapies with Dr. Ian MacDonald
youtu.be/Kt-7oQVn2nc?...
#RareDiseaseCommunity #VisionResearch
youtu.be/Kt-7oQVn2nc?...
#RareDiseaseCommunity #VisionResearch
CRF Research Spotlight: ASO Therapies with Dr. Ian MacDonald | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
September 25, 2025 at 8:00 PM
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Manage and prevent swelling: https://bit.ly/3He43qS
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
#AngioedemaCare #HAEAwareness #PatientSupport #RareDiseaseCommunity #HealthTips #AngioedemaNews #Bionews
August 20, 2025 at 11:31 PM
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Find your home: http://bit.ly/4fbgSz2
Feeling overwhelmed, exhausted, or isolated with angioedema? You’re not alone — and that’s exactly why Angioedema News is here for you.
#Angioedema #AE #AngioedemaAwareness #RareDiseaseCommunity #YouAreNotAlone #AngioedemaNews #Bionews
Feeling overwhelmed, exhausted, or isolated with angioedema? You’re not alone — and that’s exactly why Angioedema News is here for you.
#Angioedema #AE #AngioedemaAwareness #RareDiseaseCommunity #YouAreNotAlone #AngioedemaNews #Bionews
August 3, 2025 at 11:31 PM
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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
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1 reposts
5 likes
💚🩵 #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
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2 likes
Feeling overwhelmed, exhausted, or isolated with angioedema? http://bit.ly/4fbgSz2
Whether you’re looking for information, community, or support, we’re here every step of the way.
#Angioedema #AE #AngioedemaAwareness #RareDiseaseCommunity #YouAreNotAlone #AngioedemaNews #Bionews
Whether you’re looking for information, community, or support, we’re here every step of the way.
#Angioedema #AE #AngioedemaAwareness #RareDiseaseCommunity #YouAreNotAlone #AngioedemaNews #Bionews
October 23, 2025 at 6:46 PM
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#HereditaryAngioedema #HAE #HAECommunity #Orladeyo #BioCryst #HaeAwareness #LivingRare #ChronicIllnessCommunity #RareDiseaseAwareness #HAECare #OralTherapy #HealthInnovation #RareDiseaseCommunity #ChronicIllnessAwareness #BioNews #AngioedemaNews
October 20, 2025 at 2:07 PM
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Emotional health matters! https://bit.ly/4mIIZZV
Explore ways to support your mental well-being while living with HAE.
#MentalHealth #EmotionalWellness #HAESupport #SelfCare #RareDiseaseCommunity #AngioedemaNews #Bionews
Explore ways to support your mental well-being while living with HAE.
#MentalHealth #EmotionalWellness #HAESupport #SelfCare #RareDiseaseCommunity #AngioedemaNews #Bionews
September 25, 2025 at 11:31 PM
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We had attendees come from a wide range of backgrounds, including academic researchers (60%), and caregivers and family members (13%). Thank you!
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
March 28, 2025 at 7:03 PM
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🏕️ Camp Sunshine is almost here - our biggest one yet! Help us make it extra special by donating snacks from our Amazon Wishlist 💛
📦 Everything ships directly to us!
🧡 Donate here: bit.ly/CampSunshine...
#TeamTelomere #CampSunshine #SnackSupport #RareDiseaseCommunity
📦 Everything ships directly to us!
🧡 Donate here: bit.ly/CampSunshine...
#TeamTelomere #CampSunshine #SnackSupport #RareDiseaseCommunity
June 23, 2025 at 9:08 PM
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Discover skin care tips and routines for HAE: https://bit.ly/44Z5Fi6
#SkinCare #AngioedemaCare #HealthTips #PatientSupport #RareDiseaseCommunity #AngioedemaNews #Bionews
#SkinCare #AngioedemaCare #HealthTips #PatientSupport #RareDiseaseCommunity #AngioedemaNews #Bionews
September 24, 2025 at 11:31 PM
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Find caregiver resources and tips: https://bit.ly/43OFSb8
Caregivers play a vital role in HAE management.
#Caregivers #HAESupport #FamilyCare #PatientCare #RareDiseaseCommunity #AngioedemaNews #Bionews
Caregivers play a vital role in HAE management.
#Caregivers #HAESupport #FamilyCare #PatientCare #RareDiseaseCommunity #AngioedemaNews #Bionews
September 28, 2025 at 11:31 PM
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RDRN supports individuals in forming teams that provide opportunities to collaborate, innovate, and drive meaningful change.
Find out more about joining RDRN as an individual here: rd-rn.org/why-join/ind...
#RareDisease #RareDiseaseResearch #RareDiseaseCommunity
Find out more about joining RDRN as an individual here: rd-rn.org/why-join/ind...
#RareDisease #RareDiseaseResearch #RareDiseaseCommunity
February 6, 2025 at 12:56 PM
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1 likes
Looking for more resources regarding COVID-19 & the #rarediseasecommunity? As a member of the @GlobalGenes Foundation Alliance, we want to share their thorough resource list. This includes gov resources, opportunities for virtual social interaction & more:...
November 23, 2024 at 2:28 PM
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Join Team Telomere and Camp Sunshine for a meaningful and fun experience — where families truly find family.
#TeamTelomere #CampSunshine #RareDiseaseCommunity #FamilySupport #TBD
May 29, 2025 at 7:01 PM
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You can learn more and register here: tinyurl.com/2enxbrph
#IMPaCTtrials #HealthWebinar #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
#IMPaCTtrials #HealthWebinar #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity
May 16, 2025 at 8:23 PM
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Get tips for managing HAE attacks: https://bit.ly/4mxg9vv
#HAEManagement #AttackPrevention #PatientCare #HealthTips #RareDiseaseCommunity #AngioedemaNews #Bionews
#HAEManagement #AttackPrevention #PatientCare #HealthTips #RareDiseaseCommunity #AngioedemaNews #Bionews
September 18, 2025 at 11:31 PM
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Nutrition, Diet & Exercise for CHM Health with Dr. Katie Bales
youtu.be/AyYkzWy8J-8?...
#CureCHM #Choroideremia #RareDiseaseCommunity
youtu.be/AyYkzWy8J-8?...
#CureCHM #Choroideremia #RareDiseaseCommunity
Nutrition, Diet & Exercise for CHM Health with Dr. Katie Bales | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
September 25, 2025 at 8:21 PM
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#HAE #HereditaryAngioedema #ServiceDogs #HaeCommunity #LivingRare #ChronicIllnessSupport #HAEAwareness #MedicalAlertDog #HaeWarrior #RareDiseaseCommunity #InvisibleIllness #ServiceDogLife #ChronicIllnessAwareness #RareDiseaseAwareness #BioNews #AngioedemaNews
October 21, 2025 at 2:03 PM
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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
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2 likes
You can learn more about our work at tinyurl.com/555rpch7
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity #RareDiseaseAdvocacy
#RareKidsCAN #PediatricRareDisease #RareDiseaseResearch #RareDiseaseCommunity #RareDiseaseAdvocacy
May 20, 2025 at 6:08 PM
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#HAE #HereditaryAngioedema #SupportGroups #ChronicIllnessCommunity #HAEA #RareDisease #HAEAwareness #PatientSupport #Advocate #LivingWithHAE #InvisibleIllness #RareDiseaseCommunity #BioNews #AngioedemaNews
October 9, 2025 at 2:04 PM
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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
August 2, 2025 at 11:31 PM
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✨You’re invited!
12th International Meeting on Neuroacanthocytosis Syndromes, Cohen Syndrome, and VPS13-related Disorders.
🔗 Details (English, Deutsch, Español) naadvocacy.org/12th-interna...
#neuroacanthocytosis #VPS13Adisease #XKdisease #CohenSyndrome #RareDiseaseCommunity
12th International Meeting on Neuroacanthocytosis Syndromes, Cohen Syndrome, and VPS13-related Disorders.
🔗 Details (English, Deutsch, Español) naadvocacy.org/12th-interna...
#neuroacanthocytosis #VPS13Adisease #XKdisease #CohenSyndrome #RareDiseaseCommunity
July 21, 2025 at 12:28 PM
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