Sharing Our Rare Disorder Journey As part of our awareness campaign this September, our SS community members from around the world joined together to create a footprint in the world of digital awareness. This short video is available for viewing on several social media platforms and offers a unique window into the superficial siderosis patient rare disorder journey. When you […]
Round Up For Research To spread awareness during September Superficial Siderosis month, Caffe’ Crema owners Tanya and Greg Beers have added a “ROUND-UP FOR RESEARCH” option to their online ordering app and in-store sales. Customers will be given an option of rounding up their purchase to the nearest whole dollar for donation to the SSRA. They also can bump their […]
Superficial Siderosis Awareness Month is Here September has arrived, and the SSRA regional directors are working overtime on our Superficial Siderosis Awareness month campaign. As a result, the education articles are hitting inboxes, our social media feeds are humming, and our advocates are stepping up to spread the word about Superficial Siderosis. One look at the efforts of our Rocky […]
Rare Disease Legislative Advocacy In A Virtual World Every year representatives from rare disease organizations from across the country travel to Washington DC. We advocate for legislative issues of importance to the rare disease community by sharing with our legislators and Congressional staff how healthcare policies impact our rare journeys. This annual event also provides a unique opportunity to meet […]
Removing Regulatory Roadblocks There are over 7,000 identified rare diseases and disorders in the world. While Superficial Siderosis may impact a small number of people, the Everylife Foundation believes a cumulative 30 million Americans are living with all these conditions. 93% to 95% have no FDA-approved treatments. While there are many reasons, research and regulatory challenges remain high on the […]
It’s A Virtual World It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research Alliance and our SS community during this two-day virtual event. On Wednesday, March 3rd, the SSRA will meet with Senator Ted Cruz and Senator John Cornyn’s offices. On Thursday, March 4th Rori will meet with Representative Pat Fallon and Representative […]
Sharing The SSRA Mission
This past year has certainly been an experience as we learned to navigate the waters of virtual events. Everyone is disappointed there will be no banquet this winter, but we hope that 2021 turns the corner so we may again safely enjoy your company. Expanding our 5k fundraiser to include the entire world as a virtual race and transitioning our […]
