Social Security Fast-Tracks Decisions for People with Severe Disabilities

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Agency Expands Compassionate Allowance List   Nancy A. Berryhill, Acting Commissioner of Social Security, today announced five new Compassionate Allowance conditions: Fibrolamellar Cancer, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS), Megalencephaly-Capillary Malformation Syndrome (MCAP), Superficial Siderosis of the Central Nervous System, and Tetrasomy 18p. Compassionate Allowance is a program to quickly identify medical conditions and serious diseases that meet Social…

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Living with a rare neurodegenerative disease

Brain Alliance Fiona

  The Australian Brain Alliance August 1, 2018     In April 2015, Fiona Parkinson went from an ordinary Mum of three boys who worked part time and worked on the family’s hobby farm, to having to walk with a stick. It took seven months to be diagnosed with Superficial Siderosis, a rare neurodegenerative disease. “Over the seven…

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The Patient Registry Registration Instructions

SS Patient Registry

The website address is:   Take your time and look around the public areas of the website. The email sign-up is for general website announcements ( Map updates, Charts posted, news on requests, etc.). Other than popping in to see the location map after it updates or some of the sample charts you won’t be expected to…

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This man has had a bleed on his brain ever since he was eight years old


Doctors discovered a tumour in his brain two decades ago By Mark Smith Health Correspondent   Wales Online 11:41, 10 JUN 2018   When Rhys Holmes was just eight years old, he began experiencing constant headaches, sight problems, and terrible dizziness. After a trip to his optician who referred him to hospital, doctors discovered a tumour in his brain which needed…

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The SS Patient Registry

Superficial Siderosis Patient Directory

  The Superficial Siderosis patient registry is completing the final stages of testing this week. Other than needing a coding tweak or two you should expect the official roll-out early on Tuesday, June 12th.

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Coming Soon! Patient Registry Website

SS Patient Directory Title

Going Live Soon: Superficial Siderosis Patient Registry Website   The new Superficial Siderosis Patient Registry website will be going live in a few weeks. Living With Superficial Siderosis is partnering with The Silent Bleed and our SS community advocates to promote a patient-centered superficial siderosis registry. We envision a centrally located website where SS patients around the world can share their relevant data, geographic…

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