The HPS Network is proud to announce that we have continued our certification as a platinum member of NORD. NORD maintains high ethical standards for patient advocacy groups in order to make sure that we are doing the very best for the populations we serve. Being a member of NORD affords us the opportunity to network and collaborate with other rare disease groups, as well as the leader in rare disease voices.
NORD is a respected presence on Capitol Hill, which is crucial in advocacy and getting important legislation passed. Platinum members have passed the most rigorous standards. The HPS Network engages in medical education, we fund research, and review Request For Proposals to study HPS through our association with the American Thoracic Society (ATS). We also maintain a patient registry and have a scientific advisory board, all requirements for maintaining our NORD platinum status.