Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile
Fibrous Dysplasia Support Society

@fdssuk

The aim of the Fibrous Dysplasia Support Society UK is to encourage, promote and assist a better understanding of Fibrous Dysplasia and McCune-Albright Syndrome

ID: 964152251941040129

linkhttp://fdssuk.org.uk calendar_today15-02-2018 14:59:44

468 Tweet

338 Takipçi

209 Takip Edilen

JORGE FERNANDEZ (@drjorfer) 's Twitter Profile Photo

Incidence and Prevalence of Fibrous Dysplasia/McCune-Albright Syndrome: A Nationwide Registry-Based Study in Denmark | The Journal of Clinical Endocrinology & Metabolism | Oxford Academic🔴✅ academic.oup.com/jcem/article/1…

NIDCR at NIH (@nidcr_nih) 's Twitter Profile Photo

Here’s a look into how the Boyce lab at NIDCR studies and tests treatments for the #raredisease fibrous dysplasia/McCune-Albright syndrome, which affects the bones, hormones, and skin. youtube.com/watch?v=XjF_Xo… #FDMAS

Brittle Bone Society (@brittleboneuk) 's Twitter Profile Photo

Today is #InternationalDayofFriendship & we are proud to continue the legacy of international friendships with @OIFE_OI & OI Foundation as well as our friendships within the patient organisations in the Rare Bone Alliance, @xlh_uk FOP Friends Metabolic Support UK, Soft Bones UK & Fibrous Dysplasia Support Society!

Today is #InternationalDayofFriendship &amp; we are proud to continue the legacy of international friendships with @OIFE_OI &amp; <a href="/OIFoundation/">OI Foundation</a> as well as our friendships within the patient organisations in the Rare Bone Alliance, @xlh_uk <a href="/FOPFriends/">FOP Friends</a>  <a href="/weareMSUK/">Metabolic Support UK</a>, Soft Bones UK &amp; <a href="/FDSSUK/">Fibrous Dysplasia Support Society</a>!
Osteoporosis-NL @osteoporosis-nl.bsky.social (@osteoporosis_nl) 's Twitter Profile Photo

A potential role for nivolumab in treatment of fibrous dysplasia-related pain. M Jay et al. JCEM Case Rep 18 Sept 2024 tinyurl.com/yzvcmmj3 …report of a unique case demonstrating improvement in FD-related pain following treatment nivolumab because of melanoma

Osteoporosis-NL @osteoporosis-nl.bsky.social (@osteoporosis_nl) 's Twitter Profile Photo

Concurrent fibrous dysplasia is associated with a high incidence of cystic formation in vestibular schwannomas. Q Liu et al. Neurosurg Rev 25 Oct 2024 tinyurl.com/4z4nzfew … retrospectively large review clinical and radiological features of patients with VSs

Concurrent fibrous dysplasia is associated with a high incidence of cystic formation in vestibular schwannomas. Q Liu et al. Neurosurg Rev 25 Oct 2024 tinyurl.com/4z4nzfew   … retrospectively large review clinical and radiological features of patients with VSs
UMiami Pathology (@umiamipathology) 's Twitter Profile Photo

Gastric polyps with dysplasia in McCune Albright syndrome - caused by sporadic post-zygotic mutations in GNAS, leading to constitutional mosaicism with fibrous dysplasia of bone, precocious puberty, café au lait macules, and GI tract lesions. PMID:s 28188442; 30124968

Gastric polyps with dysplasia in McCune Albright syndrome -  caused by sporadic post-zygotic mutations in  GNAS, leading to constitutional mosaicism with fibrous dysplasia of bone, precocious puberty, café au lait macules, and GI tract lesions. PMID:s 28188442;  30124968
ROC | Royal Orthopaedic Charity (@fundroh) 's Twitter Profile Photo

Meet Joel! (Middle) After a rugby injury and diagnosis of Fibrous Dysplasia, Joel had spinal surgery at The Royal Orthopaedic Hospital. Now, he’s giving back by running the Great Birmingham Half Marathon with his brothers & friends to raise funds for ROC. Show your support: shorturl.at/3hBw7 💙

Meet Joel! (Middle)
After a rugby injury and diagnosis of Fibrous Dysplasia, Joel had spinal surgery at <a href="/ROHNHSFT/">The Royal Orthopaedic Hospital</a>.
Now, he’s giving back by running the Great Birmingham Half Marathon with his brothers &amp; friends to raise funds for ROC.
Show your support: shorturl.at/3hBw7 💙
Rare Disease Day (@rarediseaseday) 's Twitter Profile Photo

💜🌍 Today is Rare Disease Day! 🌍💜 Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! ⚖️ Learn more: rarediseaseday.org

💜🌍 Today is Rare Disease Day! 🌍💜

Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! ⚖️

Learn more: rarediseaseday.org
Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile Photo

Best practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium - PMC pmc.ncbi.nlm.nih.gov/articles/PMC65…

Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile Photo

Expression of RANKL in breast cancer tissue in patients with fibrous dysplasia/McCune-Albright syndrome - ScienceDirect sciencedirect.com/science/articl…

Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile Photo

Extent of Extraskeletal Manifestations of Fibrous Dysplasia/McCune-Albright Syndrome in Patients with Mazabraud's Syndrome - PubMed pubmed.ncbi.nlm.nih.gov/34854944/

MOLAB - Mathematical Oncology Lab (@molab_uclm) 's Twitter Profile Photo

📢 New paper available! A mathematical model of fibrous dysplasia provides valuable insights into the abnormal growth of bone cells and suggests a potential diagnostic biomarker. 📖👉🏻 molab.es/publication/?i…

📢 New paper available!

A mathematical model of fibrous dysplasia provides valuable insights into the abnormal growth of bone cells and suggests a potential diagnostic biomarker.

📖👉🏻 molab.es/publication/?i…
Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile Photo

I hope this also includes patients with rare diseases like Fibrous Dysplasia…. It’s harder to get support and information if you have a rare disease let alone find a clinician who even knows about it!

Shicheng Guo (@shihchengguo) 's Twitter Profile Photo

Study reveals Protein Kinase A's crucial role in fibrous dysplasia: Activation causes FD-like lesions in mice with skeletal stem cell mutations. New therapeutic target! PMID:40593719, Nat Commun 2025, Nature Communications doi.org/10.1038/s41467… #AI #Pharma #BioMed #RNA #ASHG #ESHG

Elena Tsourdi (@elena_tsourdi) 's Twitter Profile Photo

Beyond high-dose denosumab: Dr Boyce delivers a fascinating talk re alternative treatments in fibrous dysplasia including modulation of OC activity through La protein and targering Gas signaling #ASBMR2025

Beyond high-dose denosumab: Dr Boyce delivers a fascinating talk re alternative treatments in fibrous dysplasia including modulation of OC activity through La protein and targering Gas signaling #ASBMR2025
NCIRE (@ncireveterans) 's Twitter Profile Photo

Study led by Dr. Kelly Wentworth seeks to understand the contributions of cellular mosaicism and the effects of variant-bearing cells on the surrounding microenvironment in skeletal development using fibrous dysplasia. sciencedirect.com/science/articl…

Study led by Dr. Kelly Wentworth seeks to understand the contributions of cellular mosaicism and the effects of variant-bearing cells on the surrounding microenvironment in skeletal development using fibrous dysplasia.
sciencedirect.com/science/articl…
Fibrous Dysplasia Support Society (@fdssuk) 's Twitter Profile Photo

Plasma proteomic markers of pain and emotional dysfunction in fibrous dysplasia/McCune-Albright syndrome - ScienceDirect sciencedirect.com/science/articl…