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 to the ultra-rare nature of superficial siderosis, it remains critical that all persons diagnosed can participate in research studies. Therefore, our membership into EURORDIS is the next step towards the Superficial Siderosis Research Alliance, completing our mission of becoming a truly global alliance.

Rori-Suzanne Daniel, Executive Director, SSRA

EURORDIS-Rare Diseases Europe

Rare Diseases Europe (EURORDIS) is a unique, non-governmental patient-driven nonprofit alliance of 975 rare disease patient organizations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease across Europe. In addition, EURORDIS actively contributes to rare disease research policy development and is a partner in many initiatives and projects.

EURORDIS is attracting an increasing number of patient organizations outside of Europe and is gaining traction at promoting rare diseases at the international level. Our vision is to unite, expand and reinforce the rare disease movement of patient organizations and patient advocates worldwide. By connecting patients, families, and patient groups, bringing together all stakeholders, and mobilizing the rare disease community, Rare Diseases Europe strengthens the patient voice and shapes research, policies, and patient services. For more information, visit eurordis.org.

Rare Disease Day

Rare Diseases Europe partnered with 100 rare disease organizations to found the internationally celebrated Rare Disease Day. Since its launch in 2008, thousands of events have taken place worldwide, reaching millions of people and actively engaging national and international decision-makers and media to champion rare disease issues, from Peru and the United States to France, Tunisia, and Singapore.

Rare Disease Day has proved to have a lasting impact on social and policy development, creating an inspiring vision of the future and giving people living with a rare disease all over the world an opportunity to speak out and take action. It celebrates our collective strength with policy makers, researchers, innovators, clinicians, carers and helpers and all other stakeholders to be stronger together to provoke positive change for people living with a rare disease

Yann Le Cam, Chief Executive Officer, Rare Diseases Europe

Rare Diseases

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 7,000 different rare diseases have been identified, affecting 30 million people in Europe and 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering is inadequate, and research is limited. Despite their significant overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment, and research benefits.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. With over 7,000 identified rare diseases and disorders. Superficial siderosis is classified as an ultra-rare disorder with less than 300 cases identified in the U.S. and is yet to be determined worldwide.

Superficial Siderosis Research Alliance

The Superficial Siderosis Research Alliance (SSRA) is a U.S.-based 501(c)(3) nonprofit organization headquartered in Waukesha, WI, supporting patients and families who have been diagnosed with the ultra-rare disorder superficial siderosis of the central nervous system. The alliance was founded in 2019 by Kyle Dempsey, President, and his wife, Sue Dempsey.

SSRA Vision Statement

Our vision is a future where a Superficial Siderosis diagnosis is no longer a life-altering condition.

Mission Statement

The Superficial Siderosis Research Alliance’s mission is education, advocacy, and to seek, raise, and provide funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder.