SSRA | Living with SS (@livingwithss) 's Twitter Profile
SSRA | Living with SS

@livingwithss

Superficial Siderosis Research Alliance 501(c)(3) dedicated to funding research | Living With SS information and insight on living with superficial siderosis

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linkhttp://linktr.ee/SSRA calendar_today30-05-2015 11:31:22

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Keynote speaker Dr. Michael Levy, Superficial Siderosis Clinic and Research Lab MGH Neurology Superficial Siderosis youtu.be/cIiJs09CpmQ?si… #2025SSsymposium #neuro

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#hematology Dr. Philip Haddad clinical care presentation Monitoring and Managing Chelation Therapy in Superficial Siderosis youtu.be/cIiJs09CpmQ?si… #2025SSsymposium #chelation #superficialsiderosis

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2025 Superficial Siderosis Symposium Keynote Speaker Michael Levy MD, PhD Superficial Siderosis Clinic and Research Lab MGH #2025SSsymposium

2025 Superficial Siderosis Symposium Keynote Speaker Michael Levy MD, PhD Superficial Siderosis Clinic and Research Lab MGH  #2025SSsymposium
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Inside the 2025 Research Roundtable: How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis ssra.livingwithss.com/blog/inside-th… #Neuroscience #neurology #biobank #superficialsiderosis

WouterSchievink (@wouterschievink) 's Twitter Profile Photo

90+% of patients we see with infratentorial superficial siderosis have an underlying spinal CSF leak. This week we saw two other causes: a IVth ventricular ependymoma (postop dural thickening from overdraining shunt) and bilateral jugular vein occlusion ⁦SSRA | Living with SS⁩ ⁦

90+% of patients we see with infratentorial superficial siderosis have an underlying spinal CSF leak. This week we saw two other causes: a IVth ventricular ependymoma (postop dural thickening from overdraining shunt) and bilateral jugular vein occlusion ⁦<a href="/LivingwithSS/">SSRA | Living with SS</a>⁩ ⁦
SSRA | Living with SS (@livingwithss) 's Twitter Profile Photo

The 19th of September marks Superficial Siderosis Awareness Day. Living with this rare progressive disease means battling hearing loss, balance issues, lost independence and a lack of understanding 💚Today listen, learn and support those living with #SuperficialSiderosis

The 19th of September marks Superficial Siderosis Awareness Day. Living with this rare progressive disease means battling hearing loss, balance issues, lost independence and a lack of understanding 💚Today listen, learn and support those living with #SuperficialSiderosis
SSRA | Living with SS (@livingwithss) 's Twitter Profile Photo

We asked our community what they wish people knew about living with Superficial Siderosis 📷 #teamsuperficialsiderosis #we_are_the_ssra #awarenessday #iwishpeopleknew

We asked our community what they wish people knew about living with Superficial Siderosis 📷

#teamsuperficialsiderosis
#we_are_the_ssra
#awarenessday
#iwishpeopleknew