APBD Research Foundation

APBD Research Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from APBD Research Foundation, Medical Research Center, 2257 East 63rd Street, Brooklyn, NY.

Founded in 2005, the APBD Research Foundation is the only nonprofit organization dedicated to finding a cure for APBD, while improving the lives of those impacted.

⏰ Only 2 days left — Have you registered yet?🌍 International APBD Patient Chat — This Wednesday!We’re thrilled to welcom...
10/27/2025

⏰ Only 2 days left — Have you registered yet?

🌍 International APBD Patient Chat — This Wednesday!
We’re thrilled to welcome Grace Viggiano from COMBINEDBrain as our guest speaker! She’ll introduce the CRID (Clinical Research ID), a powerful tool helping advance APBD research, and walk us step by step through how to register during the session.

This is a rare chance to:
✅ Learn how YOU can directly support APBD research
✅ Get a live CRID registration walkthrough
✅ Connect with APBD patients from around the world
✅ Ask questions in a supportive group setting

📧 Register now: https://loom.ly/0lxkwQQ

(Registration is required)

10/24/2025

Our Executive Director, Natacha Pires, MS, MBBS, proudly represented the APBD community at National Organization for Rare Disorders, Inc. (NORD)’s 2025 Breakthrough Summit, joining over 900 rare disease advocates, researchers, clinicians, and industry leaders.

The Summit theme, "Voices to Breakthroughs," emphasized the power of patients and families as the driving force behind rare disease research progress. It also underscored the importance of collaboration and community. 💪

🧬 Let’s keep pushing forward—together.

🌍 Join Our Next International APBD Patient Chat! 🌟We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome M...
10/21/2025

🌍 Join Our Next International APBD Patient Chat! 🌟

We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental as a guest speaker! During this special session, patients will learn about CRID (Clinical Research ID), its importance for advancing APBD research, and how to sign up and participate. The session will include a walkthrough of the CRID registration process, giving everyone a clear, step-by-step guide in a supportive group setting.

This is a unique opportunity to connect with patients from around the world, ask questions, and see how your participation can help advance rare disease research.
📧 Interested in attending? Please register here: https://loom.ly/0lxkwQQ

🗓️ National Estate Planning Awareness Week | October 20–26, 2025Did you know that nearly 60% of adults don’t have a will...
10/20/2025

🗓️ National Estate Planning Awareness Week | October 20–26, 2025

Did you know that nearly 60% of adults don’t have a will or estate plan? Planning ahead protects your loved ones, ensures your wishes are honored, and can leave a lasting legacy.

This week, take a moment to create or update your estate plan. It’s one of the most important acts of care for your family and future.

💙 Learn more and get started with FreeWill, a free tool to create a will and plan your legacy.

👉 Get started: https://frwill.link/apbdrf1024

🎉 Want to Celebrate and Give Back?Milestones such as birthdays, weddings, anniversaries, bar/bat mitzvahs, and memorials...
10/17/2025

🎉 Want to Celebrate and Give Back?

Milestones such as birthdays, weddings, anniversaries, bar/bat mitzvahs, and memorials, or building your own event, are all meaningful opportunities to honor loved ones while advancing APBD research. Every contribution makes a difference and is tax-deductible. 💙

In this photo, community member Robin Knoll hosted a Pampered Chef fundraiser with her friend Jill Lerner, raising $1,200 to support our mission!

✨ Interested in hosting your own fundraiser? We’d love to help! Contact Anesa Kajtazovic (our Foundation's Community Affairs Manager) at anesa@apbdrf.org.

🌐 Foundation Launches Redesigned Website!We’re thrilled to share that the APBD Research Foundation has launched a refres...
10/16/2025

🌐 Foundation Launches Redesigned Website!

We’re thrilled to share that the APBD Research Foundation has launched a refreshed and reorganized website, still at apbdrf.org! 🎉

The redesigned site makes it easier than ever to find what you need—whether you’re newly diagnosed, a caregiver, a researcher, or a supporter. Explore updated resources, upcoming events, personal stories from the APBD community, and new ways to get involved in advancing research.

👉 Visit today and bookmark apbdrf.org to stay connected!

🌍 Join Our Next International APBD Patient Chat! 🌟We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome M...
10/14/2025

🌍 Join Our Next International APBD Patient Chat! 🌟

We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental as a guest speaker! During this special session, patients will learn about CRID (Clinical Research ID), its importance for advancing APBD research, and how to sign up and participate. The session will include a walkthrough of the CRID registration process, giving everyone a clear, step-by-step guide in a supportive group setting.

This is a unique opportunity to connect with patients from around the world, ask questions, and see how your participation can help advance rare disease research.

📧 Interested in attending? Please register here: https://loom.ly/0lxkwQQ

| Our Foundation’s Research Manager, Lindsay Gill, PhD, represented APBD families during COMBINEDBrain’s 2025 Clinical...
10/09/2025

| Our Foundation’s Research Manager, Lindsay Gill, PhD, represented APBD families during COMBINEDBrain’s 2025 Clinical Readiness Day and Annual Summit (Brentwood, TN)

Partnerships with organizations such as COMBINEDBrain are vital steps forward, providing new connections, knowledge, and hope for everyone facing rare diseases. 💙

👉 Read more: https://loom.ly/LS8dj9I

🌱Plant the seeds of care for your loved ones, ensuring your legacy is preserved and your most precious family members ar...
10/08/2025

🌱Plant the seeds of care for your loved ones, ensuring your legacy is preserved and your most precious family members are protected. October is National Family History Month, so consider using the free FreeWill tool to create a will and plan your legacy.

👉 Get started: https://frwill.link/apbdrf1024

👋 Meet Henry Daumeyer, Our New Genetic Counseling Intern!We’re thrilled to welcome Henry Daumeyer to the APBD Research F...
10/08/2025

👋 Meet Henry Daumeyer, Our New Genetic Counseling Intern!

We’re thrilled to welcome Henry Daumeyer to the APBD Research Foundation team! 💙

Henry is a Genetic Counseling graduate student at Columbia University and will be interning with us through May 2026. He’s passionate about the intersection of clinical care, advocacy, education, and science—and about supporting rare disease communities.

During his internship, Henry will:
🔹 support and survey patients in our new Biorepository project
🔹 collaborate with APBD researchers and help build new connections
🔹 share stories from patients and caregivers for our newsletter and media

Please join us in giving Henry a warm welcome to our community!

🌍 Join Our Next International APBD Patient Chat! 🌟We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome M...
10/07/2025

🌍 Join Our Next International APBD Patient Chat! 🌟

We’re excited to welcome Grace Viggiano from COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental as a guest speaker! During this special session, patients will learn about CRID (Clinical Research ID), its importance for advancing APBD research, and how to sign up and participate. The session will include a walkthrough of the CRID registration process, giving everyone a clear, step-by-step guide in a supportive group setting.

This is a unique opportunity to connect with patients from around the world, ask questions, and see how your participation can help advance rare disease research.

📧 Interested in attending? Email Harriet Saxe at harriet@apbdrf.org

Have You Considered Becoming a Monthly Donor?Setting up a monthly donation is quick and easy! Whether it’s $10, $50, or ...
10/06/2025

Have You Considered Becoming a Monthly Donor?

Setting up a monthly donation is quick and easy! Whether it’s $10, $50, or $100, every contribution makes a difference. Choose a giving level that works for you and supports our mission throughout the year.

👉 Learn more at https://loom.ly/32GW7lU

Your decision to give a monthly gift can have a powerful impact on the lives affected by APBD. With your support, we can continue to fund essential research and provide crucial resources to patients and families in need.
If you have any questions, feel free to reach out to Anesa at anesa@apbdrf.org.

Together, we can accomplish so much more!

Address

2257 East 63rd Street
Brooklyn, NY
11234

Telephone

+16465805610

Website

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