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heathermason

Young Ambassadors for Rare Diseases

On day 17 of our rare disease initiative, I will not be writing a personal story, but some insight into the young voices of the community, that I have always felt were not adequately heard.

During this initiative, I have written stories from a parent's or an adult patient perspective. When I heard about a webinar being hosted by the Rare Disease Day team, on this subject, I knew that it would be an excellent learning opportunity for me, and also for the wider community.

The young advocates that presented in this webinar were truly an inspiration, and I have no doubt that their voices are soon to get louder, and they will evoke change for the rare disease community.





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