Rare Disease Day

Rare Disease Day is observed on February 28 every year around the world through 66 national alliances. It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! The National Organization for Rare Diseases (NORD), of which the APBD Research Foundation is a member, is the official US partner for Rare Disease Day. Visit the website, rarediseaseday.org for all of the events and materials produced for this special day.

Rare Disease Day is a time for our community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including APBD.

“Shine a Light on APBD” on Rare Disease Day

Rare Disease Day is a time for our community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including APBD. Thank you to everyone that sent in a photo and/or shared a quote for our fabulous video montage with sound. Today, we celebrate each of you, your families, and the incredible resilience you show every single day of the year.

24 Hours of Rare

February 28th 7:00 am EST
We are pleased to join the 24 Hours of Rare global celebration of the rare disease community! Join us at 7:00 am EST for a “Turning the Tide” panel discussion hosted by RARE Revolution Magazine featuring Dr. Wyatt Yue, our 2021 MDBR grant recipient.

More info https://24hoursofrare.com/

February 28th 2:00 pm EST
Join us at 2:00 pm EST as we share the “We are APBD” video and “A Patient Story: Deberah Goldman.” These videos will be followed by a wonderful Q&A with Jeff and Eden Lord and Deberah Goldman.

More info https://24hoursofrare.com/

“Rare Disease Awareness Special” APBD Patient Chat

Feb. 23, 2022, 8pm ET | 5pm PT
We’re thrilled to have Dr. Clyde Partin (Emory University School of Medicine) join us as a special guest. Dr. Partin is recognized as an expert in rare and undiagnosed diseases.

Honor a Loved One: Give the Gift of Hope

Is there an important date on your calendar?  You know the one you never forget. It may be the date your loved one passed, or your wedding anniversary, or perhaps it’s a birthday.  There are many occasions to celebrate someone special in your life while supporting the work of the APBD Research Foundation.  When you make an annual gift to the APBD Research Foundation in honor of or in memory of someone special, you not only aid in critical research and push us closer to a cure; you help us remember too.

    WHO ARE YOU HONORING WITH YOUR TRIBUTE?

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    APBD Research Foundation Attends Rare Disease Day event at the NIH

    The APBD Research Foundation is excited to exhibit at the Rare Disease Day event organized by the National Institutes of Health. This virtual event — taking place on Feb. 28, 2022, 10am-6pm ET — aims to raise awareness of rare conditions and discuss current scientific advances. It’s also a great opportunity to meet with NIH staffers, researchers, and our peers in the rare disease community as well as discuss how we can work together to address the unmet needs of people struggling with APBD.

    Global Chain of Lights

    Light Up for Rare is part of the Global Chain of Lights campaign, which aims to unite the rare disease community across the globe and symbolically break the isolation caused by the COVID-19 pandemic.