Quiet Before the Storm

Summer Update 2022 Unbelievably we’re about to begin the second half of 2022 already. If you had a chance to look through our 2021 Annual Report, you might be familiar with the SSRA plans for this year. So it seems the perfect time to let everyone know about our progress with a summer update on what’s happening behind the scenes. […]

SSRA Welcomes Dr. Natallia Kharytaniuk

The Superficial Siderosis Research Alliance is pleased to announce the appointment of Natallia Kharytaniuk MB BCH MRCS(ENT) MRCS(I) MCH, a clinical doctoral research fellow at the Ear Institute, University College London, UK, to the SSRA Medical and Scientific Advisory Board. Dr. Kharytaniuk’s background is clinical; obtaining her medical degree with second-class honors at the National University of Ireland, Galway. She […]

What’s Happening in 2022

Our Progress The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In […]

David Werring, FRCP, Ph.D., FESO Joins the SSRA Medical Advisory Board

The Superficial Siderosis Research Alliance is pleased to announce the appointment of Professor David Werring, FRCP Ph.D. FESO to the SSRA Medical and Scientific Advisory Board. Professor Werring brings a rich experience into research and clinical care of superficial siderosis patients. Professor Werring has published over 300 papers and contributed to several books. He is an editor of the forthcoming […]

ROADMAP Project

Earlier this year, the Castleman Disease Collaborative Network reached out to the SSRA with a request to participate in a project meant to develop a well thought out plan rare disease organizations could implement to resolve the roadblocks patient organizations face in trying to gain approval for repurposing of drugs currently on the market for therapeutic use in unrelated conditions. […]

SSRA Announces Appointment of Kelly Morgan To The Board Of Directors

SSRA Leadership 2022 The Superficial Siderosis Research Alliance is pleased to share the appointment of Kelly Morgan to the SSRA Board of Directors. In addition, Ms. Morgan will serve as a member of the Grant Oversight Group and Board Member-at-Large. Following the appointment of Ms. Morgan, the Board will comprise ten directors. “We are pleased to welcome Kelly Morgan to the SSRA Board,” […]

Games, Trains, and SS Awareness

Game Train USA Driving December SS Awareness Game Train USA believes by championing local nonprofits and the causes they support is how they can give back to the community in a very big way. We’re proud to announce the Rocky Mountain Superficial Siderosis Research Alliance has been chosen as their featured charity for the month of December. We would like […]

Caregiver Respite Program

Caregiver Assistance The NORD Respite Program provides financial assistance to allow caregivers a break to attend a conference, event, or simple day out. Financial assistance is offered as a grant of up to $800 annually for those who qualify. A first-of-its-kind assistance program, this grant is designed for caregivers of someone diagnosed with a rare disorder. We all understand how […]

SSRA Announces EURORDIS Membership

The Superficial Siderosis Research Alliance is pleased to announce its membership application to EURORDIS, a federation of patient organizations and people active in rare diseases was recently accepted by the EURODIS Board of Directors. By becoming a member of EURORDIS, The SSRA reaffirms its commitment to provide research support to all superficial siderosis patients, no matter where they may currently reside. Due […]

The SSRA Marks Our Second Year

The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021 Since its inception in 2019, the SSRA has been honored to represent the superficial siderosis rare disorder community. Battling a rare disorder is difficult, but patients and caregivers are no longer alone in this fight with the Superficial Siderosis Research Alliance (SSRA). This past year the SSRA […]