- Chelation Therapy
Generic Chelation Medication Set To Launch
Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new…
Read More » - Advocacy
Finding A New Purpose
Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as…
Read More » - Hearing
- Personal Stories
Living In Upside Down World
I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had…
Read More » - Personal Stories
A Day In My Life
My Life With Superficial Siderosis Rhys Holmes In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition…
Read More » - Vision
- Personality Change
Changes
We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may…
Read More » - Brain Project
One More Family
Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from…
Read More » - Therapeutic Alternatives
Combating Neural Damage
The holy grail of neurodegenerative disease research is discovering a pathway to healing—reversing neural damage, either through regeneration or surgical…
Read More » - Advocacy
Meet Kelly Morgan
The SSRA is excited to introduce everyone to grant writing team member, Kelly Morgan. This has been a challenging few…
Read More » - Patient Registry
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…
Read More » - News
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…
Read More » - SSRA
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,…
Read More » - Mobility and Balance
Balancing Act
Some days are better than others but you really start to worry about the future when you hear the unmistakable…
Read More » - Advocacy
The Decade that Was
The eve of a new year is a time for reflection. When I look back on our lives at the…
Read More » - Chelation Therapy
Is Your Chelation Working?
When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during…
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