Earlier this month, the TANGO2 Research Foundation was admitted as a member to the National Organization for Rare Diseases. We’re very excited to partner with NORD and lean on them for guidance and advice as we continue to build out and grow our organization to learn more about TANGO2 disease and how to best treat it. We’re joining a network of not only experts from NORD itself, but of all of the rare disease organizations that are part of their membership.
From NORD’s Web Site:
NORD works closely with new and existing patient organizations. We help them promote best practices in governance and management, innovation in patient/family services, and advocacy that is deeply rooted in integrity. In serving patient communities that often struggle with very significant challenges, patient organizations must balance the challenge of meeting today’s needs and evolving to meet those of the future.
NORD staff members welcome the opportunity to share their experiences and advice with leaders of rare disease patient organizations. We are able to help organizations at all levels of their development from the initial launch to those who are engaging in strategic growth after years of operation.
A big thanks to Lori Oppenheimer, Membership Associate and the NORD Board of Directors – we’re looking forward to working with you to be the best we can be in helping and advocating for children and young adults impacted by TANGO2 disease.