You have to sell a million records for an album to go platinum. It’s a huge accomplishment! And we’re feeling that way about our recent designation as platinum-level members of NORD! Platinum membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries.
NORD (The National Organization for Rare Disorders) is an American non-profit organization that provides support for individuals with rare diseases by advocating and funding research, education, and networking among service providers. NORD was founded on the principles of collaboration and a united voice, and they provide guidance and support at all phases of development as organizations evolve. More than 280 disease-specific organizations are part of NORD; The SPSRF is the only platinum member dedicated to finding a cure for SPS.
“The National Organization for Rare Disorders (NORD) is thrilled to welcome The SPSRF as the latest official NORD member organization,“ said Peter Saltonstall, NORD President and CEO. “The SPSRF joins a dynamic, collaborative network of more than 300 rare disease members with access to all the resources and connections that NORD provides, including connections to major rare disease stakeholders, exclusive access to NORD member-only events, leadership resources and capacity building training.”
We see great value in NORD membership:
- Connecting to the major influencers in the rare disease community, bringing unparalleled opportunities for peer-mentoring and networking with NORD staff and other organizational leaders.
- Receiving analyses of legislative and regulatory activity. Through sign-on letters, webinars, briefings, and workshops, members gain insight into pressing policy issues and add their perspectives, views and voice to key issues.
- Getting access to educational webinars and regional membership meetings giving our organization opportunities to engage in the policy process, interact with government officials, and build capacity by adopting best practices.
- Reaching the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries.
We are honored to be going platinum, knowing we have the strength of a national rare disease network behind us!