Living With Superficial Siderosis

Living with Superficial Siderosis is the informational site of the Superficial Siderosis Alliance. Contact the editor: admin@livingwithss.com

News
Living With Superficial SiderosisJune 22, 2022
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Community Forum Launches
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect…
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Best Life
Living With Superficial SiderosisSeptember 3, 2021
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Chair Yoga for Mobility and Balance
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best…
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Hearing
Living With Superficial SiderosisSeptember 26, 2020
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Sensorineural Hearing Loss
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Vision
Living With Superficial SiderosisSeptember 21, 2020
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Nystagmus
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Brain Project
Living With Superficial SiderosisMay 8, 2020
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One More Family
Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from…
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Patient Registry
Living With Superficial SiderosisMarch 26, 2020
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The Superficial Siderosis Patient Registry
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful…
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News
Living With Superficial SiderosisFebruary 20, 2020
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Introducing Mass General Research Institute
Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new…
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SSRA
Living With Superficial SiderosisJanuary 14, 2020
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Believe in Hope 2019 Benefit
We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019,…
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Education
Living With Superficial SiderosisOctober 11, 2019
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Who Doesn’t Love a Freebie?
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the…
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SSRA
Living With Superficial SiderosisOctober 9, 2019
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Introducing the Superficial Siderosis Research Alliance
Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience…
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SSRA
Living With Superficial SiderosisAugust 3, 2019
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Meet Dr. Michael Levy
The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor.…
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Advocacy
Living With Superficial SiderosisJanuary 20, 2019
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Spotlight Profile: Amanda Fearn-Banfield
Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The…
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Advocacy
Living With Superficial SiderosisMay 22, 2018
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Meet Rhys Holmes
Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished…
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Superficial Siderosis
Living With Superficial SiderosisDecember 22, 2017
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Life Expectancy of Superficial Siderosis Patients
Superficial Siderosis Life Expectancy It’s human nature to wonder How long will I live? When you’ve been diagnosed with a…
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Webinars
Living With Superficial SiderosisJuly 28, 2015
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Superficial Siderosis Webinar Transcript
Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download…
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Webinars
Living With Superficial SiderosisJuly 23, 2015
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Superficial Siderosis Webinar
Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what…
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