NNPDF

National Niemann-Pick Disease Foundation

[NNPDF @nnpdf]

📣 NNPDF is excited to welcome Heather Moran-Teal as it's new Executive Director. 💙 Her passion for rare disease advocacy will help lead next chapter of support, education, and hope. Read more at https://t.co/RnB3NwjLC2 #NNPDF #NiemannPickDisease #RareDisease #PatientAdvocacy

[NNPDF @nnpdf]

Check out our Conference Agenda at a Glance! 💙 Reconnect with the NNPDF family, meet new faces, learn, collaborate, and strengthen our community together. Register + book your room today: https://t.co/K3jS5BiOyY

[NNPDF @nnpdf]

In our latest News & Updates edition, we welcome Heather Teal, NNPDF Executive Director, share important conference updates, spotlight the Peterson family, celebrate milestones, and more! Read it here: https://t.co/MBUUP6oEHH

[NNPDF @nnpdf]

CONFERENCE ATTENDEES: Order your NNPDF gear by June 9 for free shipping to the Family Support & Medical Conference! Shop now at https://t.co/hsEcxgLVCu

[NNPDF @nnpdf]

We’re extending Early Bird Registration for the NNPDF Conference to May 21st! Join us for a weekend of education, connection, and hope - don’t miss the Early Bird rate! Registration information: https://t.co/LeGmtJLLcG

[NNPDF @nnpdf]

Just a friendly reminder to register for the Family Support & Medical Conference by May 17th to take advantage of the Early Bird registration rates! We look forward to an incredible time together and can’t wait to see you all in Orlando! Learn more at https://t.co/ElTQuOnqQz

[NNPDF @nnpdf]

The NNPDF is happy to share our April 2026 News & Updates! Check it out at https://t.co/Q8U4njXLQr

[NNPDF @nnpdf]

We are thrilled to share incredible news! Acid Sphingomyelinase Deficiency (ASMD) has officially been approved for inclusion on Wisconsin’s Newborn Screening Panel. Read complete announcement at https://t.co/LIQF8iAGtp

[NNPDF @nnpdf]

UPDATE FROM AZAFAROS
NNPDF is pleased to share that additional U.S. study sites for Azafaros' Phase 3 NAVIGATE study will be opening in the coming weeks. Read the complete update and register for a Community Update Webinar with Azafaros at https://t.co/Kjdcj9xTlp

[NNPDF @nnpdf]

Join us for Community Connections Chat on Wednesday, April 29 at 6:00pm ET for an informal open space to share, ask questions, and connect with others in our Niemann-Pick community. Join the conversation! Register at https://t.co/vxJOG34sGs

[NNPDF @nnpdf]

We’re excited to share the NNPDF’s March 2026 News & Updates! Take a look and see what’s new! https://t.co/a42TXyjrVI

[NNPDF @nnpdf]

Join us for our Family Support & Medical Conference! Connect with families, caregivers, clinicians, researchers, advocates, funding partners, and our Board of Directors and Scientific Advisory Board to share, support, and celebrate our community. Visit https://t.co/ElTQuOnqQz

[NNPDF @nnpdf]

NNPDF is sharing an opportunity from Beren Therapeutics for NPC patients and caregivers to participate in a 60-minute virtual interview focused on disease awareness and early diagnosis. learn more at https://t.co/05Aw54kySo

[NNPDF @nnpdf]

Beren Therapeutics announced that the U.S. FDA has accepted its NDA for adrabetadex in infantile-onset Niemann-Pick type C (NPC) with Priority Review. PDUFA date: August 17, 2026. This acceptance is an important milestone for the NPC community. Read more: https://t.co/OT85CY0bAi

[NNPDF @nnpdf]

Our February NNPDF Newsletter is here! Stay up to date with the latest community news, Rare Disease Day information, Community Voices Spotlight, and important foundation updates. Read the full newsletter and stay connected at https://t.co/P4fOD8ZUlg

[NNPDF @nnpdf]

NNPDF is seeking a compassionate, caring Family Services Manager to join our team in supporting the needs of families affected by Niemann‑Pick disease and strengthening the programs and services that support our community. Learn more at https://t.co/DtvrXKUnEm

[NNPDF @nnpdf]

Thank you to our dedicated Scientific Advisory Board for your unwavering commitment and expertise. Your work impacts the Niemann-Pick community and advances care and hope for families affected by rare diseases. We are truly grateful for all you do! 💜
#RareDiseaseDay #NiemannPick

[NNPDF @nnpdf]

NNPDF is seeking an experienced and passionate leader to serve as its Executive Director - to lead a small, capable, and dedicated team that is making a meaningful difference for individuals and families affected by Niemann-Pick disease. Learn more at https://t.co/szyQP4VlWI

[NNPDF @nnpdf]

#RareDiseaseDay is a time to shine a light on Niemann-Pick Disease, along with the millions affected with rare diseases worldwide. Every share can raise awareness, bring hope, and inspire change! GET INVOLVED at https://t.co/3DIpPx85b7.
#NiemannPick #ASMD #NPC

[NNPDF @nnpdf]

Our January 2026 Newsletter has just been published! Check out our Community Voices Spotlight featuring Jesika Coulbern, community updates, upcoming Rare Disease Day information, and more at https://t.co/jlLYX7kJOH