🤝Today's #EHCRoundTable sent a clear message: patients with #ExtremelyRare #BleedingDisorders must not be left behind. Collaboration between patients, clinicians & policymakers is essential — and the work starts now.
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🗣️ "Patient voices are central to improving care for #ExtremelyRare #BleedingDisorders. Lived experience should be brought to the centre of hospitals' work to shape better research priorities, healthcare policies & treatment pathways." — Marina Pimentel at the #EHCRoundTable
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🔎 One of the biggest challenges highlighted today at the #EHCRoundTable: lack of data on #ExtremelyRare #BleedingDisorders. Improving registries, research collaboration & knowledge sharing will be key to advancing care.
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🗣️ "Huge progress has been made in #BleedingDisorders, but patients with #ExtremelyRare conditions can still fall through the cracks. The therapeutic strategies to improve care exist — we just need to develop them." — Dr Cedric Hermans at the #EHCRoundTable
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The #EHCRoundTable panel discussion is underway with Dr Cedric Hermans, Dr Maria Elisa Mancuso & patient Marina Pimentel: how can we ensure no patient with an #ExtremelyRare #BleedingDisorder is left behind?
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EHC European Rare & Inhibitor Network (#ERIN): improving knowledge, driving advocacy & empowering patients with #ExtremelyRare #BleedingDisorders to engage with policymakers. 🗣️Maja Sondergaard Knudsen on the network's mission at #EHCRoundTable.
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📢 Living with an #ExtremelyRare #BleedingDisorder means complex treatment routines, specialised medication storage, navigating insurance systems & managing education & work life. Patient voices are essential to improving care. #EHCRoundTable
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🗣️ Dr Katharina Holstein at the #EHCRoundTable outlines key challenges in #ExtremelyRare #BleedingDisorders: heterogeneous bleeding phenotypes, lack of clinical trials & no established guidelines. More research and European collaboration are urgently needed.
@eahad.bsky.social
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At #EHCRoundTable, Dr Maria Elisa Mancuso highlighted that diagnosing #ExtremelyRare inherited #BleedingDisorders demands expert physicians, specialised labs & multidisciplinary teams. Building expertise is essential for better patient care.
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The conversation is about to start! 🇪🇺
We're live at the #EHCRoundTable on Unmet Needs in #ExtremelyRare #BleedingDisorders in Brussels. Experts, policymakers & patient voices united around one goal: ensuring no one is overlooked.
Follow this thread for live updates 👇🧵
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🩸 #ExtremelyRare #BleedingDisorder of the Month: #FactorXDeficiency. 🔎 Often undiagnosed & causing lifelong unpredictable bleeding risks. 📣 Awareness saves lives. Learn more 👉 buff.ly/51eKT7M
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📣Today, we mark #RareDiseaseDay with the global community 🌍 For those living with #ExtremelyRare #BleedingDisorders, the path to diagnosis & care is rarely easy. #ERIN exists to connect, amplify, and stand beside you — because your voice matters. 💚 @rarediseaseday.bsky.social
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🩸Living with #FactorVDeficiency means nosebleeds that won't stop, bruises from nowhere & bleeding that keeps going. This rare clotting disorder affects people of all ages— & awareness matters. 🔗 Learn more: buff.ly/wg3GP88
#ERIN #ExtremelyRare
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🎉 Welcome to our #ERIN Committee’s new members! Together, we'll strengthen ERIN's impact, raise awareness & advocate for better care for #ExtremelyRare #BleedingDisorders. Thank you to outgoing members for your dedication! 👉 buff.ly/BWGSWaj
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💚 On 5–7 Dec, we hosted #ERIN2025 in Berlin, uniting patients with #ExtremelyRare #BleedingDisorders & families. 🗣️ Sessions covered treatment updates, unmet needs & lived experiences. 🤝 Thanks to the ERIN Committee for their dedication! #EHCommunity
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How cool is this! I cleaned it up linda-howes.pixels.com/featured/ext...
#ExtremelyRare #PepBoysPromotionalFlyer1926 #PetBoysChristmasAd #HolidaySale #Turkeys #Tires #AutmobileParts #ChristmasTree #PhiladelphiaPA #AutoAccesories #giftideas #wallartforsale #VintagePetBoys
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🩸 New recording available from our June 2025 #ERIN Webinar on #ExtremelyRare #BleedingDisorders! Patients & healthcare professionals discuss challenges & solutions.🗣️ Dr Saskia Schols, Helen Tate & Christina Vösl
📺 Watch it now: www.youtube.com/watch?v=Pm0i...
w/ @eahad.bsky.social
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📢 Tomorrow join our #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs
In collaboration w/ @eahad.bsky.social
🔗
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📢 Next week join our #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs
In collaboration w/ @eahad.bsky.social
🔗 Register now:
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📢 Join the EHC #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 2025 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs
In collaboration w/ @EAHADnews
🔗 Register now:
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📢 Join the EHC #ERIN Webinar on Addressing the Needs of People with #ExtremelyRare #BleedingDisorders 🗓️ 10 June 2025 🕕 18:00 CEST 🗣️ EN | RU 💻 Zoom 👥 Patients & HCPs
In collaboration w/ @eahad.bsky.social
🔗 Register now: community.ehc.eu/event/webina...
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Muse Evolution Photography LLC
MuseEvolutionPhotography.com
Additional Links:
Linktr.ee/MuseEvolution
Fine Art Nude Photographer
John Lewis Rushing Jr
Model
Hailey J
Location
Portland, Oregon
#ExtremelyRare #LimitedEdition #FineArt #ContemporaryArt #Photography #FarmersDaughter #SilverHalide
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