Rare Disease International (RDI) is a global alliance of rare disease patient organizations designed to be an international voice for the rare disease community. One of its key initiatives is to include rare diseases in the Universal Health Coverage being developed by the United Nations (UN) for the year 2030.

Chairing the RDI Council is Durhane Wong-Rieger, who also acts as the president and CEO of the Canadian Organization for Rare Disorders.

In this interview, Wong-Rieger explains the strategy in place to include rare diseases in the UN’s Universal Health Coverage initiative and why it is important that rare diseases be recognized globally.

Wong-Rieger said, “ We just hosted a day at the United Nations through our nongovernmental organization on rare diseases in the UN with 15 sponsoring the Member States and many other countries that were actually participating, trying again to get global policies that say rare diseases are important. We’re trying have rare diseases included, specifically in the UN declaration on universal health coverage, so this is the big initiative.”

Currently, the United Nations’ universal health coverage conversations are focused on ‘vulnerable populations’. Wong-Rieger believes rare disease should be included. Wong-Reiger noted, “They’ve identified within this declaration what they call vulnerable populations so to make sure when you’re developing these policies and you’re developing these health plans that you include those that are the most vulnerable , like migrants, low-income women, HIV. And what we want to say is that a very vulnerable population that must be mentioned are those who have rare diseases. Because no matter what the economic level, no matter what the level of development of the country, and in many other respects, persons with rare diseases tend to be left out. They tend have the least access to specialty care, the least access to research, the least access in terms of treatments.”

Wong-Rieger continued, “Unless you’re specifically recognizing that these are in fact an important vulnerable population, you’re not going to get to the goal which the UN has called they’re 2030 goal to leave no one behind.”

For more information, visit https://www.rarediseasesinternational.org/


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