Post by Sobi - Swedish Orphan Biovitrum AB (publ)

Name: When rare voices come together. Last week, we brought together patients, caregivers, advocates and
Uploaded: 2026-07-06T06:00:31.824Z
Channel: Sobi - Swedish Orphan Biovitrum AB (publ)
Description: When rare voices come together. Last week, we brought together patients, caregivers, advocates and healthcare professionals from across Europe, Canada and Japan for the first face-to-face C3G and pri

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When rare voices come together. Last week, we brought together patients, caregivers, advocates and healthcare professionals from across Europe, Canada and Japan for the first face-to-face C3G and primary IC-MPGN Patient Council in Milan, Italy. For some, it was the first time meeting someone living with the same condition. Over two days, we listened to experiences of diagnosis, uncertainty and navigating life with an ultra-rare kidney disease. We also heard about resilience, hope and the importance of connection. Engaging with the community is essential to understanding unmet needs and shaping relevant support and resources. Thank you to everyone who joined and shared their perspectives with openness and trust. #Sobi #RareDiseases #KidneyHealth #PatientEngagement #C3G #ICMPGN #RareKidneyDisease #Unite4Rare

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