Unfortunately, yesterday was the last day of the rare disease initiative I have been doing with the rare disease community in February. Other stories were lined up, but people with rare diseases often have very challenging lives and do not have the time or energy to write their stories on top of everything else.
So, today, I wanted to take the opportunity to thank everyone who was able to share something. I've said it before, and I will repeat it here: You are all an amazing, courageous and determined bunch of people. I have been truly in awe of you. Many of you did not know me before I contacted you out of the blue with this initiative, yet you entrusted me with sharing your story.
I have taken some key themes from your stories, and I will write a summary highlighting some of the gaps in rare diseases and what we could do as a community to fill them.
For those who participated, I will put a document together and share it with you at the end of the month.
If you see an article on a rare disease, always share. Be part of someone’s solution; we never know what struggles others are having.
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