DocTalk Podcast: Rare Disease Day 2020


Sika Dunyoh, director of education programs with NORD, discusses that year in rare disease and what to expect moving forward.

While almost every field in medicine has grown by leaps and bounds in recent decades, this statement may be most true when discussing progress made in rare disease.

The strides made in recent years have been noticeable on multiple fronts. From education to awareness to research and development of new therapies, the field of rare disease is in the midst of a massive push forward and it appears it will remain that way for the foreseeable future.

A countless number of people have seen the benefit and been impacted by this change in the field, but just as many have contributed time and effort into growing awareness and educating about rare diseases. Patient advocacy and awareness groups are paramount when discussing any serious condition, but those in the rare disease space have gone above and beyond in recent years—setting a new standard for outreach and impact.

One of the many groups involved in promoting rare disease is the National Organization for Rare Disorders (NORD). Founded in 1983 with the goal of providing support for those affected by rare disease as well as advocating and funding research in rare disease.

With this in mind, HCPLive® invited Sika Dunyoh, director of education programs with NORD, to take part in a special Rare Disease Day edition of the DocTalk Podcast. While every member of NORD has an important position that contributes to ever-increasing awareness and concern for individuals with rare disease, HCPLive wanted to learn more about how outreach and education has impacted the space.

In this episode of the DocTalk Podcast, Dunyoh discusses changes in the field, significant moments from the past year, overlooked areas of research, and how education programs from the organization will continue to push progress forward.

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Elizabeth Cerceo, MD | Credit: ACP
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