The Superficial Siderosis Research Alliance is a member of the National Organization of Rare Disorders (NORD). The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in policy, research, and care. The Orphan Drug Act defines a rare disease as a disease or condition that affects fewer than 200,000 people in the United States. Superficial Siderosis (SS) is an ultra-rare disorder as it affects fewer than 50,000 patients in the USA. Current estimates indicate that superficial siderosis affects approximately 300 people in the USA, or one out of every million people.
Why NORD Matters
NORD has created the first-ever large-scale longitudinal study in the U.S. examining how the experiences and challenges of people impacted by rare disease change over time. Rare disease is a public health issue, but we lack the data to prove it. By participating in the study and sharing your information, you’ll help NORD show the significant unmet needs of the community, find solutions, and advocate for greater support.
Who Can Participate
NORD is seeking individuals who live in the United States and have been diagnosed with a rare disease, suspect they may have a rare disease, or are caregivers for someone with a rare disease. The more people who join the Living Rare Study®, the more powerful the data becomes—helping fuel changes that the rare disease community needs and deserves!
How You Can Help
Data drives change, so we are asking you to consider joining and participating in this important study.
If you are living with superficial siderosis, your experience matters. Please complete the NORD Living Rare Study® survey to help document the real-world challenges our community faces and to strengthen advocacy for better care and research. Add your voice today at https://livingrarestudy.org/.
What is NORD?
The National Organization for Rare Disorders (NORD) is a nonprofit advocacy organization dedicated to improving the lives of individuals and families affected by rare diseases. Through research, education, patient services, and public policy, NORD works to ensure that people living with rare conditions have access to the care, treatment, and resources they need. NORD also drives awareness and advances in medical research, serving as a united voice for the rare disease community.
