A great NSPKU conference in Cardiff yesterday. Lovely to see so many new faces, a reminder to head out beyond the usual places.
Lots of updates, new products and research coming. Just organising my thoughts and will report in the blog soon!
#RareDisease
Một người đàn ông ở Hà Nội uống hơn 10 lít nước mỗi ngày và đi tiểu gần 20 lần do được chẩn đoán suy tuyến yên. Tình trạng khát nước liên tục này đã ảnh hưởng nghiêm trọng đến cuộc sống hàng ngày của anh.
#SứcKhỏe #Health #BệnhHiếm #RareDisease #SuyTuyếnYên #PituitaryDisorder
https://vietnamnet.vn/nguoi-dan-ong-o-ha-noi-uong-hon-10-lit-nuoc-moi-ngay-2449942.html
🎁 Free to subscribe! Plus, you get a gift ebook: "PKU & Mental Health"
📬 October's newsletter looks at the turmoil in the UK pharmaceutical industry, why this matters - and what you can do.
💚 PKU news: Support NSPKU in parliament, another promising treatment in development
🧠 Brain news: Do we have a sideline test for concussion at last?!
🥘 Plus: 4 Low-protein recipes to try out
#PKU #LivingWithPKU #RareDisease #Concussion #LivingWithMildBrainInjury #TBI #PKUFood
https://www.pigpen.page/oct-2025/
Veranstaltungstechnik und -orga bei der Familienkonferenz des Vereins "Hand in Hand gegen Tay-Sachs, Sandhoff und GM1" für den deutschsprachigen Raum (und darüber hinaus). In diesem Jahr feiert der Verein sein Zehnjähriges.
https://tay-sachs-sandhoff.de/2025/09/04/grosse-familienkonferenz-zum-zehnjaehrigen-bestehen/
#SelteneErkrankung #RareDisease #Selbsthilfegruppe #TaySachs #MorbusSandhoff #GM1 #Würzburg
Soligenix expands European Medical Advisory Board to advance Phase 3 HyBryte trial for cutaneous T-cell lymphoma, targeting innovative rare disease treatment with promising photodynamic therapy #RareDisease #MedicalResearch
Actor Lee Dong-gun Diagnosed with Rare Ankylosing Spondylitis Affecting 1% of South Koreans – 조선일보
Actor Lee Dong-gun Diagnosed with Rare Ankylosing Spondylitis Affecting 1% of South Koreans 조선일보Lee Dong-gun’s Rare Disease Struggles Shock…
#NewsBeep #News #Headlines #ankylosingspondylitis #Latvia #LeeDong-gun #LV #raredisease #uveitis
https://www.newsbeep.com/152684/
Một người mẹ trẻ (SN 1995) tại Hải Phòng đang chiến đấu với căn bệnh ung thư hiếm gặp. Hai con nhỏ luôn động viên mẹ từng ngày. Cộng đồng hãy chung tay hỗ trợ gia đình vượt qua khó khăn này! ❤️
#UngThu #HiếmGặp #CộngĐồng #GiúpĐỡ #Cancer #RareDisease #CommunitySupport #Vietnam
https://vietnamnet.vn/nguoi-me-tre-mac-ung-thu-hiem-gap-can-cong-dong-chung-tay-giup-do-2444628.html
Microsoft explores AI assistant for diagnosing rare diseases
https://web.brid.gy/r/https://nerds.xyz/2025/09/microsoft-ai-assistant-diagnosing-rare-diseases/
The following hashtags are trending across South African Mastodon instances:
#musicministry
#donations
#announcement
#meeting
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
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The following hashtags are trending across South African Mastodon instances:
#dreamed
#announcement
#meeting
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#dreamed
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
#hearingloss
#lowvision
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#dreamed
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
#hearingloss
#lowvision
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#dreamed
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
#hearingloss
#lowvision
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#dreamed
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
#hearingloss
#lowvision
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
The following hashtags are trending across South African Mastodon instances:
#bible
#jesuschrist
#repentance
#ushersyndrome
#usherawarenessday
#raredisease
#retinitispigmentosa
#hearingloss
#lowvision
#genetictesting
Based on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
Usher Syndrome Awareness Day — 20 Sept 2025. A rare genetic condition causing hearing loss + progressive vision loss. Early diagnosis, rehabilitation and informed care make a difference. Share to raise awareness. #UsherSyndrome #UsherAwarenessDay #RareDisease #RetinitisPigmentosa #HearingLoss #LowVision #GeneticTesting #CochlearImplant #VisionRehab #GeneTherapy #VitaminA #SCABPharmacy
Một người đàn ông 31 tuổi trải qua các cơn đau bụng dữ dội, nôn mửa và giảm ý thức sau hai ngày mất ngủ liên tục. Triệu chứng này có thể liên quan đến một căn bệnh hiếm gặp, cần được chẩn đoán và điều trị kịp thời. #HealthAlert #SucKhoe #RareDisease #BenhHiemGap #SleepDisorder #RoiLoanGiacNgu
Việt Nam có khoảng 6 triệu người mắc bệnh hiếm, phần lớn là trẻ em. Bộ Y tế đang tìm giải pháp để giải quyết tình trạng thuốc điều trị đắt đỏ và khan hiếm. 🥺
#benhhiem #thuocdatdo #khanhiem #bytế #rareDisease #expensiveMedicine #drugShortage #health
Curious about my Spinal Cord Stimulator? #chronicpain #chronicillness #raredisease #ehlers #ehlersdanlos #ehlersdanlossyndrome #blog #Writer #Spinalcord #stimulator #trial #recharge #baitandswitch #medtronic #painclinic #paindoctor #sales #uchealth #paincontrol #surgery #minisurgery #nervepain #lies
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