If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals!
camrarerarediseaseday2026.eventbrite.co.uk
Beyond Awareness: What the Rare Disease Community Really Needs is written across the top center of a watercolored backdrop of purple, pink and blue blend together. Embedded into the background is a DNA helix, a faint image of the back facing side of a group of people and a heart beat symbol. Underneath the title, are two awareness ribbons side by side: one ribbon a rainbow zebra theme and the other a black and white zebra theme.
Beyond Awareness: What the Rare Disease Community Really Needs
Learn more at:
www.rare360.life/post/beyond-...
#rareadvocacy #rarediseasecommunity #rare360 #rarediseaseday #livingrare #valentinesday
#HAE #HereditaryAngioedema #LifeWithHAE #HAEAwareness #ChronicIllness #HaeCommunity #HaeWarrior #RareDiseaseAwareness #LivingRare #PatientEducation #ChronicCondition #SelfAdvocacy #InvisibleIllness #RareDiseaseCommunity #BioNews #AngioedemaNews
#HAE #HereditaryAngioedema #ServiceDogs #HaeCommunity #LivingRare #ChronicIllnessSupport #HAEAwareness #MedicalAlertDog #HaeWarrior #RareDiseaseCommunity #InvisibleIllness #ServiceDogLife #ChronicIllnessAwareness #RareDiseaseAwareness #BioNews #AngioedemaNews
#HereditaryAngioedema #HAE #HAECommunity #Orladeyo #BioCryst #HaeAwareness #LivingRare #ChronicIllnessCommunity #RareDiseaseAwareness #HAECare #OralTherapy #HealthInnovation #RareDiseaseCommunity #ChronicIllnessAwareness #BioNews #AngioedemaNews
For the global rare disease community, escalating climate extremes present a unique and growing threat.
Learn more at www.rare360.life/post/why-rar...
#rare360 #raredisease #livingrare #rareadvocacy #climatechange #climatecrisis
Tragic deaths in recent #genetherapy trials for #Duchenne Muscular Dystrophy (#DMD) and Limb-Girdle #MuscularDystrophy (#LGMD) have left many in the #raredisease community shaken.
Learn more at www.rare360.life/post/tragic-...
#Rare360 #LivingRare
Did you know the #OrphanDrugAct (#ODA) has led to over 800 #raredisease treatments? But many challenges remain in access, affordability, and continued research for rare disease communities.
Learn more at www.rare360.life/post/inside-...
#rare360 #rareadvocacy #LivingRare
In a move that's sparked both intrigue & alarm across the medical industry, Montana has taken a radical leap in the world of "Right to Try" legislation.
Read more at www.rare360.life/post/montana...
#rare360
#rarediseases
#LivingRare
#rareadvocacy
#Righttotry
Learn more about the Rare360 program's efforts to repair trust and support community-based advocacy through a conversation with Rashmi Jain, Rare360's Executive Director:
www.rare360.life/post/repairi...
#rare360
#LivingRare
#rarediseases
#marketresearch
#rareadvocacy
#thoughtleadership
A new study provides groundbreaking insights into why some people stay symptom-free despite having disease genes. Visit www.Rare360.life to learn more.
Direct Link: www.rare360.life/post/why-som...
#Rare360 #LivingRare #raredisease #Rarediseases #GeneticResearch #LivingRare #RareAdvocacy
Breakthrough Discovery Uncovers a New Genetic Link to Autism Spectrum Disorder
Visit www.Rare360.life to learn more.
Direct Link: www.rare360.life/post/a-new-g...
#Rare360 #LivingRare #Autism #Rarediseases #GeneticResearch #Ableism #RareAdvocacy
Many people in the #raredisease community utilize #herbalremedies to get them through the colder #winter months.
Search “Winter Wellness Guide” at www.Rare360.life to learn more.
Direct link: www.rare360.life/post/winter-...
#LivingRare #RareAdvocacy #rare360 #rarediseases #chronicillness
Happy New Year!
#happynewyear
#raredisease
#zebrapower
#LivingRare
#rareadvocacy
#kidneydiseasewarrior
#spoonie
'tis the season to rest. Enjoy. Happy Holidays.
#seasonsgreetings
#happyholidays
#livingrare
#chronicpain
#insomnia
#rarediseases
#Fibromyalgia
#neuropathy
#kidneydisease
#anemia
#lupus
#ehlersdanlos
#RareAdvocacy
Why Should #RareDisease Patients and Caregivers Care to Participate in #MarketResearch Studies?
www.rare360.life/post/your-in...
#C3G
#C3GN
#ICMPGN
#lupus
#PNH
#rarekidneydisease
#chronickidneydisease
#ourlivesmatter
#nothingaboutuswithoutus
#livingRare
Living with #rarediseases often brings challenges that others might not understand, especially when symptoms like fatigue don’t have an obvious cause.
For many #LivingRare, #DryEyeSyndrome is a surprising contributor to daily fatigue.
www.rare360.life/post/battlin...
