Add Your Voice to the "NARRATE"

Dr. Denise Adams at the University of Pennsylvania is studying the needs of communities affected by rare diseases with the hope of bridging the gaps between rare disease patients, families, and physicians. Although each of the 7,000+ rare diseases appear different, they share common needs. If you're over 18 years of age, have APBD, or are a family member and/or a caregiver in our community, Dr. Adams seeks your input on this study called the NARRATE Study.

This year we have developed articles and resources with the help of contributing writers -- health care professionals and patient advocates in the field -- aimed at providing a better understanding of APBD and about the work being done in the field. The most-read articles of 2021 inspired hope, showed dedication, and shared the toll of APBD:

2021 Holiday Gift Guide

What does an ice roller, a waffle robe, and a Matcha Kit have in common? They are all extremely popular gifts this holiday season!

If you are stumped with what to buy that special someone on your holiday list, check out this CREATIVE IDEA LIST full of gifts sure to please EVERYONE!

Did you know that you can help support the APBD Research Foundation's mission through AmazonSmile, at no cost to you? When you shop at, you’ll find the same shopping experience as, with the added bonus that the AmazonSmile Foundation will donate 0.5% of the purchase price to support your #1 cause, the APBD Research Foundation.

Below are some simple instructions:

·       Sign into your Amazon account
·       Visit and select APBD Research Foundation as your nonprofit of choice
·       Shop and support us
·       Share this with your family and friends!
Upcoming Events
From Chat events to workshops and scientific symposiums, the Foundation hosts programs for patients, caregivers, and health professionals so as to to build community and collaboration.

These events offer peer support, opportunities to hear from health experts, and a chance to hear from Foundation leaders. Our upcoming events include:
Caregiver / Family Chat
December 9, 2021, 7:30pm ET | 4:30pm PT

Patient Chat
December 22, 2021, 8pm ET | 5pm PT

To learn more about these events and to participate, email us at
Please share this newsletter with your friends and family!
Together, we can make a difference!

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