The National Organization of Rare Disorders (NORD) is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. The PRP Alliance is a member of NORD.What they say about themselves:
The vision that drives all NORD initiatives is:
❏‹ A national awareness and recognition of the challenges endured by people living with rare diseases;
❏‹ A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;
❏‹ Access for all patients to the diagnostics and therapies that will extend and improve their lives.
❏‹ A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.
Advocacy Opportunities
❏‹ The PRP Survival Guide has agreed to assist NORD in the revision of the information about PRP contained in NORD’s Rare Disease Database report. Upon completion, NORD will publicize the fact that an update has been done.
According to Mary Dunkel, Vice President of Educational Initiatives, “The revision of a Rare Diseases Report tends to drive traffic to the report. Since our PRP report links to the PRP Alliance, that would also drive traffic to the Alliance website. Mary further notes that approximately one million visits are made each month to NORD’s website and 85% of visitors go first to a Rare Disease Database report.