- By Jennifer Wildvank

The NBIA Disorders Association is excited to announce a partnership with 4Gen Digital to launch our own online merchandise shop.

4Gen Digital is a woman-owned, family-operated business going back four generations in the printing, packaging and promotional product industry. The company’s guidance and generous in-kind support is making our shop possible.

Owner Jacqueline Thomas (momma bear to two little helpers) is based in Southern California and works alongside her father, Craig Thomas, at the company. We would also like to thank graphic designer Jacquelin Grater who designed our merchandise shop website as well as apparel and other merchandise.

Check out our new apparel, including our May 2021 conference shirts, tumbler, caps and buttons, along with several other items at this link:

Go Shopping

International shipping is available.

Rare Disease Day

Our organization marks Rare Disease Day 2023 and attracts more than $5,000 in donations

The NBIA Disorders Association once again joined the global movement to celebrate Rare Disease Day on Feb. 28 by spreading awareness for all NBIA disorders and raising over $5,000 for our family support efforts.

Each year, individuals, communities and advocacy groups combine forces to educate policymakers and the public about rare disorders and the impact they have on patients and their families. Rare Disease Day in the U.S. is sponsored by the National Organization for Rare Diseases (NORD), which shares activities and ideas for marking the day.

Many rare disease organizations and advocacy groups use the zebra to symbolize their uniqueness. Medical students are taught that when they “hear the sound of hooves, think horses.” Rarely do the hooves indicate a zebra—unless the person they are trying to diagnose has a rare disorder. Rare disease organizations want doctors and communities to recognize the zebras among them.

To that end, the NBIA Disorders Association embraces our zebra community each Rare Disease Day. This year we “showed our colors” by printing zebra coloring pages and sharing them on social media for all to see. Some of our artwork can be seen here. We also sold over 120 RARE zebra print shirts with our NBIA colors proudly displayed. They were a big hit within our community.

In addition to our zebra festivities, we focused on a central part of our mission, educating the public. We posted informational graphics with fast facts about all 10 NBIA subtypes on Facebook and Instagram. This increased our social media outreach by over 200% in February.

We are grateful to all who participated in our Rare Disease Day activities on social media or in their communities.

Zebras were spotted on Rare Disease Day 2022

Our NBIA families showed off their unique zebra stripes by wearing T-shirts we designed and sold for Rare Disease Day, Feb. 28. In addition, families and supporters donated online, contributing to the overall $7,000 that was raised to support our organization’s mission.

Zebras represent rare diseases because of a common saying in medicine: “When you hear the sound of hooves, think horses not zebras.” In other words, think of the common diagnosis, not the rare, exotic one. The rare disease community thinks of its loved ones as zebras to embrace and cherish their individuality.

NBIA Disorders Association Vice President Amber Denton, says that Rare Disease Day is a way to “come together and raise awareness for our small but mighty community,” and “to make ourselves known and our voices heard from all over the world.”

Families submitted photos of their loved ones for ‘rare zebra spotting’ posts on our social media platforms.

EURORDIS, the umbrella organization representing rare diseases in Europe founded Rare Disease Day in 2008. They, celebrated this year with a globally streamed event in Dubai as well as a conference in Paris to address European regulations regarding rare diseases.

EURORDIS and the National Organization for Rare Diseases (NORD) take the lead in promoting activities in Europe, the United States and other countries every year. This year, NORD held an online community gathering for rare disease families to connect and celebrate together as well as the popular “Light Up for Rare” program in which buildings are lit up in Rare Disease Day colors on Feb. 28.

Thanks to everyone who had a hand in helping our organization celebrate the event this year.

NBIA Disorders Association wins top prize in 2021 Rare Disease Day contest

The NBIA Disorders Association was a grand prize winner in the National Organization for Rare Disorders (NORD) 2021 Rare Disease Day contest. The top prize was a $500 Amazon gift card and the opportunity to engage a NORD representative as a speaker at one of our upcoming virtual events this year.

Our video had over 15,000 views, 348 Facebook shares and 1052 likes and comments. NORD’s membership manager, Ashanthi Di Silva, said, “ We were honored to have so many thoughtful and inspiring submissions, and your video submission was definitely a highlight for our team and the rare disease community. We appreciate the time and effort you took to create something so visually engaging and meaningful. Thank you for all you’re doing to raise awareness and fight for rare diseases.”

Kudos to our social media director, Jenny Wildvank, for creating the video.

Go to Rare Disease Day 2020

Uncles John and Matt Schoger of Worthington, Ohio, with their niece Alyssa Miles of North Canton, Ohio, who has BPAN.

Our supporters found inspiration in nature, tradition and online when raising $3,555 to support the NBIA Disorders Association in October and November.

John and Matt Schoger of Worthington, Ohio, spent five days hiking 57 miles of the Appalachian Trail in honor of their niece, Alyssa, of North Canton, Ohio, despite the threat of bad weather from Hurricane Delta. The Schogers’ trek raised $1,872 for BPAN research in October. They describe their niece as a “bright light of love and laughter to family and friends.”

Honoring a tradition that began more than a decade ago, the Bethel University Physician Assistant Program held its eleventh annual 5K walk/run to “Scare Away NBIA” Oct. 24 at Henry County High School in Paris, Tennessee. Runners and walkers, in person and virtual, donned costumes for the event, which raised $985. The tradition began in honor of the program’s then-director, whose son was diagnosed with NBIA. Cole Tanner of Germantown, Tennessee, and his family remain the inspiration for this yearly tradition. We are grateful the Class of 2022 is keeping the tradition alive.

Participants in the “Scare Away NBIA” fundraiser on October 24 in Paris, Tennessee. This was the eleventh annual Bethel University Physician Assistant Program fundraiser for NBIA Disorders Association.

In addition to those events, we received $698 from Facebook fall birthday fundraisers held by Elijah McBurney, Ralph Otte, Wanda Pimentel, Anna Rakaric, Patricia Trevino and Teasha Tyler.

We are grateful to all of our supporters and could not do our work without them.

If you are interested in organizing a fundraiser to benefit NBIA Disorders Association, we are here to help support your efforts. You can find our toolkit online at https://www.nbiadisorders.org/images/FundraisingToolkit.pdf or contact Development Committee Chair Amber Denton at amber12783@yahoo.com for advice and support.