Supporting individuals and families affected by Adult Polyglucosan Body Disease (APBD), and accelerating improved APBD diagnoses, care and treatment options.
New York, NY
Joined June 2012
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#APBD Research Foundation offers peer support through monthly virtual chat groups. To learn more and register for these events, email our team:
Patient Chats - Harriet at [email protected]
Caregiver Chats - Linda at [email protected]
#AdultPolyglucosanBodyDisease #SupportGroup
In recognition of #RareDiseaseDay on February 28, 2025, a special shout-out and thanks to Amy for joining our "Show Your Stripes" campaign and raising awareness.
#NORD #RareDiseaseDay #ShowYourStripes #APBD #PatientVoice #APBD #APBDResearch #raredisease #neurodegeneration #GSDIV
How will you SHOW YOUR STRIPES?
Join us all through February in raising awareness for APBD and other rare diseases by sharing your selfie in themed zebra-striped pins and zebra-patterned ribbon and our posts with your followers.
Email Faye at [email protected]
We are excited to share that Dr. Felix Nitschke (UT Southwestern Medical Center) and Dr. Wyatt Yue (Newcastle University) have been awarded University of Pennsylvania's @MDBRide4Rare pilot, 1-year grants to advance APBD research.
Read more here: bit.ly/4aFzLrv
We Want to Hear from You!
Take our 2-minute survey and share your thoughts to help us improve how we communicate and serve you better. Your feedback makes a difference!
📝 Click here to participate: bit.ly/3E0kghF
Your voice matters—thank you for sharing it with us!
Grab Your Free Pins & Ribbon for #RareDiseaseDay! 🦓
We have zebra-striped pins and ribbons to help you 'Show Your Stripes' for Rare Disease Day on February 28! Email Faye at [email protected] to request yours. In return, we ask for a selfie showing your stripes.
Hurry, this is first come, first served! Selfies due by February 10th.
#APBD #PatientVoice #livedexperience #awareness #Research #APBDResearch #raredisease #neurodegeneration #GSDIV #GSD #rare #ultrarare #IEM #inbornerrorsmetabolism #laforadisease #pompedisease #coridisease
APBD Research Foundation retweeted
excited to share our clinical experience diagnosing a rare adult onset inherited disorder - hopefully this should increase awareness and decrease time to diagnosis @APBDRF
Happy to share this teaching case with the amazing @JennOligoMyelin. Can you guess the diagnosis? @JAMANeuro bit.ly/40nH0Qm
61yo man presenting with 4 years of progressive weakness, gait instability, urinary incontinence, and cognitive changes. (1/6)
Do you want to know the latest on APBD therapies?
Check out our YouTube channel to explore emerging therapies shared by experts during our Fall 2024 Conference. Don’t miss this opportunity to stay informed and empowered!
📌 Watch and Subscribe here: bit.ly/4hAX88b
Do you ever feel like you're tackling APBD alone? Our monthly Patient Chats connect our community members, offer peer support, and deepen the understanding of how APBD impacts lives.
Join us on Jan. 22nd at 8pm ET | 5pm PT. To learn more, email Harriet at [email protected].
APBD Research Foundation retweeted
Mark your calendars for #RareDiseaseDay on Feb. 27–28!
@ncats_nih_gov & @US_FDA are teaming up for a two-day, hybrid #RDDatFDANIH event! RSVP now to listen and engage with panel discussions, #RareDiseases stories, and more: go.nih.gov/CaSKChZ
#FDA #NIH
ALT : Rare Disease Day logo. FDA-NIH Rare Disease Day. Feb. 27–28, 2025. #RDDatFDANIH
Happy New Year! 🌟
Here's to a 2025 filled with health, joy, and hope. Together, let's push for breakthroughs and make APBD treatment a reality. Your support drives progress—thank you! Cheers to advancements ahead!
#HappyNewYear #APBD
JUST HOURS LEFT in 2024!
Today is your last chance to make a Year-End gift to the APBD Research Foundation and have it amplified by match challenge funds! 💙✨ It's also your final opportunity for a 2024 tax-deductible donation here: bit.ly/3ZnkW94
Thank you! 💙
As 2024 ends, we THANK YOU—patients, families, clinicians, researchers, partners, and our incredible team—for your passion and support in advancing APBD research. Here's to a brighter 2025 for all impacted by APBD. Wishing you a healthy and happy New Year! 🎉
#apbd
Thank you to all our supporters—we couldn’t fight against APBD without your generosity! There’s still time to make your year-end gift by midnight, December 31st. Together, we’re making a difference!
Act now to maximize your impact visiting bit.ly/3ZnkW94.
#APBD #rare
✨ 1 Day Left to Amplify Your Impact! ✨
Dr. Ora Gordon will match year-end donations dollar-for-dollar up to $25K. Maximize your impact with your tax-deductible gift today: bit.ly/3ZnkW94.
#YearEndGiving #HolidayGiving #APBD #rare #CareAboutRare #research
We had two amazing health professionals join our "APBD Patient Chat" events this year! Dr. Jones and Becca, thank you for giving your time and expertise.
Missed one of our Chats? Find the recordings on our YouTube channel here: loom.ly/ImGkloY
#APBD #PatientVoices
