Usher Syndrome Ireland
usherireland.org
Supporting individuals & families living with Usher syndrome, a condition causing progressive hearing & sight loss. We also raise awareness & fund research. RCN:20206288 www.usherireland.org Donate: https://www.idonate.ie/forms/UsherSyndromeIreland
👤 Joined on 14 November 2024
231
Followers
229
Following
153
Total Posts
📜 Kullanıcı Geçmişi
- 14 Kas 2024, 10:15
🎉 Bluesky'e katıldı - İlk kullanıcı adı:
@usher-ireland.bsky.social - 18 Kas 2024, 12:24
✏️ Kullanıcı adı değişti:
@usher-ireland.bsky.social→@usherireland.org
❤️ Beğendiği Gönderiler
How can we strengthen evidence-based holistic care in rare diseases? At #ECRD2026, Session 2 of the Evidence-Based Holistic Care Track will explore the role of registries, SSH research & patient perspectives in improving integrated, patient-informed care. 👉 https://go.eurordis.org/register-bsky
Show Post
We're at the Cost of Disability Summit today to make sure that over two decades of advocacy alongside disabled people results in a payment that truly reflects their needs. Read our submission to the Government consultation on Cost of Disability here: rebrand.ly/44utb6p
Show Post
I have reached the point in my career where young scientists are citing my work to me as background to their project, without realizing it’s me. And you know, I don’t hate it. The value of the work transcends authorship, and that’s a good thing. #ARVO2026
Show Post
It’s @michaelfchiang.bsky.social talking at the end of the #ARVO2026 closing keynote about the NIH / NEI mission and regenerative medicine.
Show Post
Welcome to Day 2 of #ARVO2026! Visit the Annual Meeting gallery for a photo review of each day's activities in Denver. Who knows, you might even spot yourself! https://bit.ly/4w8tteu @arvoinfo.bsky.social
Show Post