It’s always a good idea to support your patient community by getting a T-shirt or ball cap, but especially so in this pandemic year.
COVID-19 disrupted and cancelled event after event and put a dent into fund-raising for just about every nonprofit group. Fortunately, many patient organizations have a range of merchandise – from pillows to neck ties (for when formal business attire returns) and, of course, face masks. Here are a few products to consider:
The white mask from NORD says “Alone we are rare. Together we are strong.” The U.S. organization also offers a wide variety of “Show Your Stripes” merchandise featuring the zebra that represents the rare disease cause. Find out why the zebra is an important symbol for patients.
Author Caryn Sonberg teamed up with the U.S. Hereditary Angioedema Association to create storybooks that help kids and siblings understand this rare disease. The first in the series, Nico’s Lunchbox, is also available here.
Sure, you can do stripes or dots or paisley on a neck tie, 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.
Other Rare Items
Raising a Rare Girl, a memoir, that gives a mother’s perspective on loving a child who has a rare disease
The book by writing professor Heather Lanier describes how she and her husband responded to the unexpected news that her daughter Fiona was born with 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.
Though her family had no history of the disease, Tara Marie Smith’s son Arlo was born with Hemophilia B, a bleeding disorder marked by the lack of a clotting factor called Factor IX. She started looking for awareness gear so she could spread the word, but she didn’t find what she was looking for. That’s how her Etsy store, Arlo & Marie Modern and Meaningful Designs, was born. It offers jewelry, apparel and teddy bears. The line’s theme is “BRAVE” because, Smith says, her son is so brave during infusions.
By holiday time, it will be just two months from an important day for all in the rare disease community: February 28 is the global commemoration of Rare Disease Day. The website for the event, organized by EURORDIS – Rare Diseases Europe, has everything you need to get ready – including gear of all sorts.
Learn more about Rare Disease Day 2021.