Being Rare Within the Rare Disease Community
“I’ve learned more about what it means to live with a rare disease as the years have passed. I’ve learned it is possible to be rare within a rare community like Duchenne.”
Betty and her family have been a part of the Duchenne MD community for years yet, it is still difficult for her to find other families that can fully relate to her unique circumstance.
Find out what makes Betty and her family rare in her article “Who Are the Rarest of the Rare.”
Do you feel particularly rare within the Rare Disease community? Is it hard to relate to and get help from others with the same disease?
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