The Superficial Siderosis Research Alliance (SSRA), a 501(c)(3) nonprofit organization dedicated to supporting Superficial Siderosis research, an ultra-rare disease affecting less than one in one million people worldwide, is pleased to announce they have been accepted for membership into the National Organization for Rare Disorders (NORD) at the platinum level.
Platinum level Membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and patient registries. New organizations wishing to qualify for Platinum Membership – and to receive Platinum level benefits – must meet our highest standards of excellence for NORD Member Organizations
NORD requires all platinum member organizations
- to be a registered nonprofit in the U.S or the international equivalent of this status.
- support a mission and programs that are compatible with NORD’s goal of being patient-centered, and advocating on behalf of patients in the rare disease community.
- promote programs that engage patients, caregivers, medical professionals and supporters in one or more of the following ways: research, professional education, public education & health promotion, health services, community services, advocacy, and social action.
- maintain an updated website
- medical information your organization provides must be medically reviewed and vetted for accuracy by scientific or medical advisors.
- be governed by a Board of Directors who are compliant with all NORD regulations, requirements, and policies regarding governance, conflicts of interest, and fiscal responsibility.
- maintain a Medical and/or Scientific Advisory board consisting of no less than three members; a policy and procedures document for expectations and management of this Medical Advisory Board.
- maintain a Board-approved annual operating budget.
- annually disclose on your website how donations are used by posting IRS form 990, an annual report, or other appropriate information on financials, income, expenses, programs, and beneficiaries.
The Importance of NORD’s Membership Criteria
Since their inception in 1983, NORD has maintained the highest level of transparency in how they are structured and how they represent the rare disease community. Their reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by a rare disease. NORD is known and respected on Capitol Hill and among stakeholders in the rare disease community – and requiring all members to meet Membership criteria helps us maintain that reputation. By adopting a demanding set of criteria, NORD ensures that our 501(c)3 patient advocacy Member Organizations embody high ethical standards and are free from any outside influences that might interfere with the voice of the patients we seek to represent.
About the National Organization for Rare Disorders (NORD)®
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment, and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.
NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with close to 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community.