Accomplishments

  • Communicated and collaborated with the Governor’s office to add the rare disease community to the COVID prioritization list.
     
  • Assisted in organizing and co-hosting monthly patient listening sessions for the Minnesota rare disease community during COVID to better understand the pandemic’s impact on patients. NORD has used the listening sessions to craft responses to COVID at the national level. Led multiple webinars for NORD to assist other states in passing legislation for and operationalizing their state councils.
     
  • Completed one of the largest surveys of the rare disease community in the US examining the in barriers accessing care in Minnesota and beyond.
     
  • Completed a front line provider survey to identify barriers the medical community faces in providing care for individuals living with rare diseases.
     
  • Collaborated with the Clinical and Translational Science Institute at the University of Minnesota on a data capture project that would allow researchers to identify which research endeavors relate to rare diseases.
     
  • Launched the first ever University of Minnesota “Students for Rare” Club The club, co-advised by Council administrator Erica Barnes, hosted numerous events including a campus-wide event featuring a motivational speaker living with a rare disease.
     
  • Conducted numerous presentations at grand rounds and medical conferences to provided education to the medical community on basic facts and barriers to care in the rare disease community.
     
  • Currently collaborating with the Minnesota Medical Association and the other stakeholders to launch a Project ECHO focused on increasing clinician expertise in transitioning youth with complex health needs from pediatric to adult care.