Public Health and the Burden of Rare Diseases

Webinar Information:

There are few public health activities that trigger stronger calls to action in public health than research into the burden of disease. Research into the burden of diseases uses standard public health measures to quantify actual and/or potential losses that populations may experience due to the presence of diseases and injuries. While efforts of estimating and monitoring the burden of diseases on a global scale are advancing and aiding in informing the design of public health programs, policy, and systems, most efforts are directed at the approximately 300 relatively "common conditions" that are known to most. So, what about the more rare diseases? There are over 8,000 rare diseases that have been identified around the world, with approximately 80% of them having a genetic origin. It is estimated that there are approximately 300 million people in the world living with rare diseases. With that many affected by rare diseases world wide, it is time to pivot our public health focus from only the common conditions, to the burden that rare diseases have as well. In 2019, the director of the National Center for Advancing Translation Studies (NCATS) at the NIH stated that rare diseases are a real and increasing problem. Many of these patients have healthcare costs that are through the roof or are unable to access healthcare for their condition, yet they and their conditions are essentially invisible. From a public health perspective it is time to expand focus from only the common burdens of disease and bring the invisible to light. Rare diseases are a public health issue.

Public Health Perspectives is a free online webinar series designed to showcase programs impacting public health. PHP discusses program design, lessons learned, and creative solutions with public health professionals around the nation. Each PHP webinar takes approximately 1-hour to complete. 

PHP Webinars are hosted live on the second Friday of each month at 10am PST.  

To join the live session, please enroll in the course before 10am PST on the day of the webinar. All PHP sessions are recorded. If you enroll after the live webinar session has ended, the course will contain a video recording of the live session you can watch instead. Please note, it may take up to one month for the recording to become available.


Learning Objectives:

At the end of the webinar, participants will be able to:

  1.  What constitutes a rare disease? 
  2. What is the rare disease burden in the US? 
  3.  What is the average cost of living with a rare disease? 
  4. How can we approach rare diseases from a public health perspective to increase programs, policy, and health system for this community?

Target Audience:

  • Public health professionals
  • Community members 
  • Students

Duration: ~ 1 hour 

Continuing Education: N/A

Speaker: Mackenzie Abramson, MPH, CPH, CHES, Operations Associate, AllStripes

About the Speaker

Mackenzie Abramson, MPH, CPH, CHES

Mackenzie Abramson recently joined All Stripes, a rare disease research organization, as an operations associate. After working in COVID-19 response over the course of the last year, Mackenzie found where her public health background can make the greatest impact. As a rare disease patient herself, Mackenzie is passionate about changing the lives of others through public health practice and research. 

As a graduate student Mackenzie traveled to Rwanda to research the burden of Albinism within the Rwandan Population. This project led her to an internship with the World Health Organization in Cairo, Egypt, where she worked in detection, verification, and risk assessments for infectious diseases. This prepared her for graduation from the MPH program at UNR and to jump right into work as a Disease Investigation Manager for COVID-19 in Northern Nevada. Now, Mackenzie has made the shift from focusing on infectious diseases to enhancing the public health response and approach to rare diseases.

 

Course Content

  • 01

    Public Health Perspectives Webinar Series

    • Calendar Invite

    • PHP Webinar Welcome

    • Demographic Survey

    • Webinar Description and Presenter Bios

    • Webinar Replay

    • Course Evaluation

    • Save the Date for Next Month's PHP

This webinar is sponsored by: