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DISORDER: The Rare Disease Film Festival

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A rare disease mom's tips for those newly diagnosed.

April 8, 2021

Our latest episode of Once Upon a Gene TV on The Disorder Channel featured our guest Becky Benson, a Tay Sachs mom and author. She had a number of great tips for those new to rare disease. One of my faves: carry business cards that explain your disease (so you don’t have to do it every time).

BeckyBensonTips.jpg


← A pediatrician (who is also a rare disease mom) on how to manage your care team.Ring Theory and Rare Disease - Compassion and Concern go toward the center. →

Disorder: RDFF is produced by Rare Outreach Coalition, LLC.