Editor’s Choice: When it Comes to Rare Diseases, Unity is Strength

Happy Friday, Patient Worthians!

This week we have articles about people working together on different types of rare disease teams. We have stories from a family who supports two children with HHT, a girl whose Friedreich ataxia diagnosis launched a fundraising campaign at her high school. We also have an article by a patient contributor lending compassion to other rare disease parents. Last, but not least, we have an article about two organization who work together to bring joy to kids with are medical conditions.

Sit back and enjoy this week’s Editor’s Choice.
Strong Parents Care for Their Two Young Children with Rare Conditions

What do you do when not one, but two of your children have the same rare disease as the dad? You work together.

Read all about it here.

Anna Doesn’t Let Friedreich Ataxia Define Her

When Anna was faced with a frightening diagnosis in her sophomore year, she began and organization and her school rallied around her in support.

Read more about the story here.

Woulda, Shoulda, Coulda for Rare Disease Families

It’s natural to imagine to look back and imagine what could have been… but is it causing parents of children with rare disease too much anxiety and regret?

Read more about the story here.

RARE Carousel of Possible Dreams Kicks Off

Are you going to be in San Francisco at the end of February? Check out this fun event supporting kids with rare diseases.

Read the story here.

Do you have a rare disease experience of your own? Share with us here.

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