Want to give holiday gifts that support the cause of rare disease awareness?
We found plenty of clever products on offer from the National Organization for Rare Disorders, the Alpha-1 Foundation, the U.S. Hereditary Angioedema Association and others. If there’s someone on your list who wants to wear their rare disease advocacy – or even incorporate it as home décor – you're in the right place. Here are some of our favorite finds:
Shop the online store for U.S.-based NORD, and you’ll find a wide array of gift ideas. They have T-shirts, hoodies, mugs and even a Rare Disease Day onesie featuring three smiling zebras. Don’t forget the dog. NORD offers a dog bandana bearing the NORD logo. Apparel includes “Rare” T-shirt designs that represent each of the 50 states.
And if you want to take your rare disease advocacy to the next level, the nonprofit is offering throw pillow covers that bear the NORD logo. These won style points at NORD’s patient summit this fall and we can see why. The opposite side of the cover features the quote: “Alone we are rare. Together we are strong.”
Is that a protein on your tie? The Alpha-1 Foundation’s most scientific gift
If you’re looking to wear your pride in the Alpha 1 community, the Alpha-1 Foundation has a selection of T-shirts, including an encouraging one that reads “Alpha-1 Mission Possible.” (The genetic illness affects the lungs and is marked by a deficiency in the protein, Alpha 1.)
Those who really want to represent – and with scientific accuracy – can purchase a neck tie that bears a repeating pattern of the Alpha 1 protein strand. The description calls the tie, with its squiggles of black and blue, “a conversation starter.” Find the tie and other gifts at the Alpha-1 Foundation online store.
Stories that inform and inspire
It can be difficult for children and teens to get their arms around the experience of having a rare disease. But story books and graphic novels let kids and teens meet characters like themselves and help break down the medical science. They’re also handy for explaining rare diseases to siblings and friends at school.
For children who have hereditary angioedema, the U.S. patient organization is promoting a three-book series by children’s author Caryn Sonberg. Find more information about the first book, “Nico’s Lunchbox,” on the U.S. Hereditary Angioedema Association (HAEA) website.
For children who have a primary immune deficiency, the Immune Deficiency Foundation offers “A Zebra Tale” for download on its website.
Earlier this year, the National Hemophilia Foundation announced its partnership with a children’s media company to produce four comic books about the disease. The books “provide contextual and age-appropriate information for children, teenagers, and families managing hemophilia.” Learn how to purchase them.
If you’re looking for books for adults, several related to rare and serious diseases were released this year:
“Chasing My Cure” by Dr. David Fajgenbaum, a physician who successfully researched his own rare disease.
Pulitzer-Prize winning writer Matt Richtel’s “An Elegant Defense,” a deep dive into the workings of the immune system.
“When Death Becomes Life,” a reflective look at promise of transplant medicine by Dr. Joshua Mezrich.
“The 50-Year Secret” by Julie MacNeil, who discovers she has the rare, genetic disease Alpha-1 antitrypsin deficiency and goes in search of her biological family.
Another powerful story was released in 2019: the documentary “Do Something: the Jeffrey Modell Story.” Lovingly told by Vicki and Fred Modell, the film remembers their son who died at 15 of a primary immunodeficiency (PI) and also chronicles their decades of dedication to research PI and help patients all over the world. The film is available via streaming services and in DVD format.
Now on Etsy.com: A crafty mom builds a BRAVE brand
With no family history, Tara Marie Smith, of Nashville, Tennessee, was shocked to learn her 6-month-old son had the bleeding disorder Hemophilia B. Soon, she went looking for a way to spread the word about the disease, which means her son lacks a clotting factor and, without treatment, is at risk of bleeding. When she didn’t find the awareness gear she was looking for, she created a store on Etsy.com inspired by Arlo, now 3.
Arlo & Marie Modern and Meaningful Designs sells clothing and jewelry for the bleeding disorder community and those who support them. In establishing a theme for the line, Tara settled on the word brave, “because Arlo is so brave when he gets his infusions.”
A man’s hoodie proclaims BRAVE HEMO DAD. A woman’s tank has the word RARE emblazoned on the front, with a raindrop-shape splash of red tucked under the A, signifying a drop of blood. A bar-shaped necklace is engraved with IX, for clotting factor IX (nine), which is missing or flawed in people who have Hemophilia B. Smith also offers a “VIII” design for Factor 8, which is the deficient or dysfunctional clotting factor that causes Hemophilia A. Another necklace bears the initials “VWD” for the bleeding disorder von Willebrand Disease.
Smith also has created a BRAVE teddy bear and a “We Are BRAVE” holiday ornament.
“It’s a very cool experience, interacting with customers in our little bleeding disorder world,” Smith said. “I hope this gives them that little extra bit of strength and encouragement.”
Rare Disease Day 2020: It’s not too early to gear up
On a rare day, Feb. 29 (Leap Day), people around the world will commemorate Rare Disease Day. The event draws global attention to rare diseases, which impact an estimated 3 million people. NORD in the United States offers Rare Disease Day gear, but if you’re in the United Kingdom or Ireland, you can shop the Rare Disease Day online store. Find shirts, hoodies, caps and totes – all bearing the colorful hands of the Rare Disease Day logo. The 2020 theme is “Reframe Rare.”
