Superficial Siderosis Research Alliance Inc

Facilitate Clinical Research Collaboration: We aim to bring together individuals, organizations, and institutions with the expertise and passion to help us develop therapies, treatments, and, ultimately, a cure for Superficial Siderosis. By fostering collaboration, we believe we can accelerate the pace of discovery and innovation.

Source Funding: We actively seek funding through direct donations and research grants. These funds are crucial in sponsoring basic, translational, and clinical research projects that can lead to breakthroughs in our understanding and treatment of Superficial Siderosis.

Provide Educational Support and Resources: We are dedicated to supporting our patient and caregiver community by providing educational resources and life support tools. We understand that a diagnosis of Superficial Siderosis can be overwhelming, and we strive to provide the necessary resources to navigate this journey.

Promote Awareness: We work tirelessly to raise awareness about Superficial Siderosis within the medical community and the general public. We believe increased awareness can lead to earlier diagnosis, better treatment options, and improved support for those affected.

Advocate for the Community: We are committed to advocating for the Superficial Siderosis and neurodegenerative communities at the state and federal levels in the United States and corresponding government entities in the United Kingdom and Australia. We believe that policy change can lead to improved research funding, better healthcare options, and greater recognition of the challenges faced by our community.

At SSRA, we are driven by these goals and the hope that through our efforts, we can make a significant difference in the lives of those affected by Superficial Siderosis.

By creating awareness within the medical, business, and philanthropic communities, we believe we can find long-term financial support for clinical research. The SSRA maintains a Platinum Membership in the National Organization of Rare Disorders (NORD) and EUORDIS.

We have created an engaged group of global volunteers consisting of patients, caregivers, family, and friends who bring their unique talents together, ensuring our organization's success.

The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in October. Our initial fundraising efforts 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 addition, leadership advocated with congressional members during legislative meetings on a federal level.

2021 saw the expansion of our global Superficial Siderosis Patient Registry to go beyond a simple registration site into a full-service clinical research support system. The patient registry implemented a research database with the capability to connect worldwide. In addition, the SSRA rolled out video conferencing for organizational use and patient/caregiver support. Our second education and information brochure for the benefit of the superficial siderosis community are available on request, at no cost, in US/Canada, UK, and AU versions.

We enter into 2022 with three research projects ready for funding, an expanded medical and scientific advisory board with global members, and research partners located at some of the most prestigious medical institutions in the world.