Editor’s Choice: Thank Your Mom, Nurses, Sister, and Inner Warrior Princess

Happy Pre-Mother’s Day Everybody!

This week we’re spotlighting four articles from or about members of the rare community. We have a tribute to nurses from a rare mom recognizing their valuable work, as well as a story from a woman who is both a nurse AND a supportive rare sister. We also have an update on a family fundraising for the son, who has been diagnosed with Duchenne, and tips from a woman with PBC about how to unleash the warrior princess within you.

Sit back and enjoy this week’s Editor’s Choice.

Rare Disease Mom Pays Tribute to Nurses

PW Contributor Dee Crompton talks about all the difference a good nurse can make when dealing with a rare disease.

Read her account here.

This Big Sis is Battling to Help 5-Year-Old Pompe Warrior

One big sister and nurse spreads the word to help her little brother.

Read about it here.



The Mother of a Boy with Duchenne Muscular Dystrophy Shares Her Family’s Experience with the Disease
What steps can a family take after a child has been diagnosed with Duchenne? One mom shares her story.

Read about it here.


My Life as a Warrior Princess: Three Tactics for Fighting PBC

Being optimistic with a rare disease like PBC can be tough. PW Contributor Leslie is tougher, and she’s here to share what has helped her through her rare diagnosis.

Learn more here.


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

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