NNPDF

National Niemann-Pick Disease Foundation

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NNPDF is excited to offer our Bringing Holiday Cheer Program, providing gifts to U.S. families affected by Niemann-Pick disease and bringing joy, comfort, and special moments to your family this holiday season!

Apply by November 30!
Learn more: https://t.co/VnhhaYnWoN

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Treatment Availability Update: We are aware of a supply issue affecting xenpozyme.
Patients should continue to follow advice from their specialist clinical teams and should not change treatment independently.
Updates & Support: https://t.co/SSz9fJILCn

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What an incredible Berkeley Family Regional Event! 🩵 Over 50 attendees joined us for a packed day of learning, emerging research, thoughtful questions, and meaningful connections. Heartfelt thanks to our families, speakers, and sponsors!

🎥 Recording coming later this week!

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That's a wrap on our Berkeley Regional Family Event! 💙

What a wonderful day of learning, connecting, and spending time together. We are so grateful for everyone who joined us and for this incredible Niemann-Pick community!
#NNPDF #NiemannPickDisease #NPC #ASMD #Community

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🌟 Tomorrow - join us LIVE ONLINE for NNPDF's Regional Family Event from wherever you are! Drop in anytime and join us for the sessions that interest you most!

📅 Saturday, November 7, 2026 | 10:00 AM PT
👉 Zoom: https://t.co/Q9NsmmoVyp
📋 Agenda: https://t.co/vWNwI2OPWp

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Caregivers deserve care and support, too. 💙 Join NNPDF's Virtual Caregiver Support Summit on November 17 to connect with others, share experiences, and discover helpful resources for your well-being.
📅 Tuesday, November 17 | 7:30–9:00 PM ET
🔗 Register: https://t.co/ywGbCebrc3

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💙 Christopher Sousa and Evren Ayik will be sharing their personal stories at this Saturday’s Regional Family Event! Join us LIVE virtually for a day of learning, expert insights, and meaningful conversations. Agenda, speaker lineup, and registration info: https://t.co/8mFXa8ogwg

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💙 Clara’s Story Matters! Please watch and share this special video in support of Clara the Battles family. Behind every story is a real family and a community that cares. Clara's story is a powerful reminder of how individualized support matters.
https://t.co/pSnysPEFJZ

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Join us LIVE online this Saturday, November 7, for NNPDF’s Berkeley Regional Family Event! Enjoy a day of learning, expert insights, and meaningful conversations to stay informed and connected. Find the speaker lineup, agenda, and registration details at https://t.co/8mFXa8ogwg

[NNPDF @nnpdf]

oin us in-person or LIVE online this Saturday, November 7, for NNPDF’s Berkeley Regional Family Event! Enjoy a day of learning, expert insights, and meaningful conversations to stay informed and connected.

Speaker lineup, agenda, and registration details: https://t.co/8mFXa8ogwg

[NNPDF @nnpdf]

💙 October may be ending, but our commitment never will.

To every family who shared their story, raised awareness, and inspired hope this month, thank you. Your stories matter. Your voices matter. And no family walks alone. 💙
#NiemannPickAwareness #NNPDF

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💙 A Perfect Day with Nicole ☀️

Bad Bunny songs, sunshine, laughter, and time with her brothers. For Nicole’s family, a perfect day is about simple joys and being together.

Every moment matters. Every family has a story. 💙

#NiemannPickAwarenessMonth #NNPDF #NPC

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For the Stites family, a perfect day is being together—making memories, sharing laughter, and cherishing every moment as they navigate Niemann-Pick disease. Love and connection matter most. 💙

#NiemannPickAwarenessMonth #NNPDF #APerfectDay #RareDiseaseAwareness

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This #NiemannPickAwarenessMonth we are reminded of the power of #community, #collaboration, and meaningful partnerships. Thank you to NNPDF Board Member Joseph Mejia, MD, for representing the NNPDF at the recent @FireflyFund Autumn Gala. We are stronger together.🩵

[NNPDF @nnpdf]

💙 A Perfect Day with the Nead Family comes down to one thing - getting to seeing their daughter's beautiful smile. This #NiemannPickAwarenessMonth, the Nead family reminds us that a smile can brighten an ordinary day and make a moment unforgettable. 🌞
#PerfectDay #NPC #NNPDF

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𝗧𝗵𝗲 𝗡𝗡𝗣𝗗𝗙 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝗡𝗲𝘄𝘀𝗹𝗲𝘁𝘁𝗲𝗿 𝗶𝘀 𝗻𝗼𝘄 𝗮𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲! 🎉 Be sure to check out all the latest news, updates, highlights, and happenings from NNPDF! 👉 Take a look and see what’s new! https://t.co/LXXIQiAenm

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💙 Ordinary days can mean everything to a family living with Niemann-Pick disease. For the Battles family, a perfect day is the comfort of everyday routines, time together, the joy of a day that goes as planned... and remembering life before NPC.
#NiemannPickAwareness #NPC #NNPDF

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🚨Tomorrow is the big day! We're excited for the Community Update Webinar with the LIVE launch of our new NNPDF Family Toolkit and brand-new website! We can't wait to share it with you!
📅 Wednesday, October 28
⏰ 6:00 p.m. EST
🔗 Register here: https://t.co/0SKZx7W4nF

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🩵 For the Anderson family, losing Meredith to ASMD has brought a new understanding of a perfect day as her love and spirited personality live on in their hearts. This #Niemann-PickAwarenessMonth, we’re reminded to cherish everyday moments. Learn more at https://t.co/JQRK6OG6fm.

[NNPDF @nnpdf]

For Carolina, a perfect day is about simple joys of home-cooked meals, surrounded by family, including her four-legged family members. 🐾

Sometimes, a perfect day is simply about who is beside you.🩷 Learn more about ASMD at https://t.co/JQRK6OG6fm.

#NiemannPickAwarenessMonth