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Meaningful Gift Guide 2021

Still holiday shopping? We recommend books and other stocking stuffers that help spread the word about rare diseases.

Gloved hands holding a holiday gift

It was a good year for readers, so we’re starting our guide with a list of giftable books about living with rare disease as patients and caregivers. We also found conversation-starting jewelry, ties and, of course, face masks.

Cover of Nico's story, a children's book with a child in a shirt and tie at Capitol Hill

Nico’s Story

For young readers, there’s Nico’s Story, the third book in a series from author Caryn Sonberg. She teamed up with the U.S. Hereditary Angioedema Association to create stories that help kids, their friends and siblings understand this rare disease. You’ll also find the first two books in the series, Nico’s Lunchbox and Nico’s Surprise, and other HAEA merchandise at the HAEA store.

Cover of Extraordinary!, a book for kids about rare diseases

Extraordinary! A Book for Children with Rare Diseases

Also for children, Extraordinary! A Book for Children with Rare Diseases takes a gentle, informative approach to explain rare disease. Written by Evren Ayik and his mom Kara (a teacher), this book sets out to uplift and encourage children. Evren, now a student at California State University, Fresno, shares his experience with the genetic disorder acid sphingomyelinase deficiency (ASMD). The mother-son team hope the book will increase compassion and respect for young people who live with rare conditions. 

Cover of Harnessing Grief, a book by Maria Kefalas

Harnessing Grief: One Mother’s Quest for Meaning and Miracles

Maria Kefalas, a professor at Saint Joseph’s University in Philadelphia and founder of the Calliope Joy Foundation, thinks of grief as her super power and published a book about it this year. The memoir, Harnessing Grief: One Mother’s Quest for Meaning and Miracles, was inspired by her daughter Cal who lives with a degenerative brain disease called late-infantile onset metachromatic leukodystrophy.

The crisis of her daughter’s condition make Kefalas a change-making advocate. Together with her family, in 2013 she started selling cupcakes for the cause, a labor of love that has amassed $800,000 for families and research. 

Memoir book cover for Raising a Rare Girl

Raising a Rare Girl

Writing professor Heather Lanier also shares an up-close look at caregiving in Raising a Rare Girl: A Memoir. The girl is Lanier’s daughter, Fiona, who lives with Wolf-Hirschhorn syndrome. The book describes how Lanier and her husband responded to the unexpected news that their child had a rare disease that affects her development. A review in The New York Times praised the memoir for illuminating “what we sign up for” when we decide to be parents.

white face mask bearing the logo for the National Organization for Rare Disorders

Masks with a Message

While we dream about the day we can leave face masks behind, keeping safe has been an essential for rare disease patients during the pandemic. If you want a mask that gives a message of hope, the National Organization for Rare Disorders offers one with the message: We are living rare, living stronger.”

neck tie that supports the Alpha-1 Foundation

The Alpha-1 Foundation’s Tie for the Cure

Sure, you can do stripes or dots or paisley on a necktie, but the Alpha-1 Foundation offers a truly unique pattern — an alpha 1 antitrypsin protein strand. The protein on the Alpha 1 Tie for the Cure is what’s missing for those who have Alpha 1 Antitrypsin Deficiency, a rare disease that can lead to lung problems. Visit the Alpha-1 Foundation shop.

Silver necklace charm of a boxing glove and zebra ribbon that says Fighting Back

A Necklace That Packs a Punch

Etsy shop owner Terri Decker, who says her passion is to create jewelry that tells a story, has created a rare disease necklace with a boxing glove charm and the message “FIGHTING BACK.” The piece also includes a zebra-print ribbon (the rare disease icon). Decker is one of several craftspeople on Etsy who offer gifts that support the cause of rare disease awareness.