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National Niemann-Pick Disease Foundation

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Join us for a Community Update Webinar: Azafaros Phase 3 NAVIGATE Study on Tuesday, September 29, at 8:30 p.m. ET to learn more about the NAVIGATE study and hear directly from the team about this ongoing research. Register today at https://t.co/bsNjCq5vm3

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Help Virginia leaders understand why newborn screening matters. 💙 For Niemann-Pick families, early identification can help connect babies to appropriate care sooner.

📅Send your letter directly to the Governor’s Office by September 21. Letter template: https://t.co/blCtMdoevb

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As we mark the 25th anniversary of 9/11, we remember those we lost and keep the families and loved ones affected by that day in our hearts. We also honor the brave men and women who sacrificed so much to save others, and we will never forget their courage and selflessness.

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Niemann-Pick Awareness Day is October 19 and we want to share more of the people and families who make this community what it is and we're asking families to help us tell that story.

💙 Your story matters. Share Your Story at https://t.co/MzIL4eNltU

#NiemannPick #ASMD #NPC

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Join EveryLife Foundation for a virtual New England Rare Disease Advocacy Day on October 6 & 7. Rare disease patients, caregivers, and advocates from CT, ME, MA, NH, RI, VT are welcome to meet and advocate for the rare disease community. Learn more at https://t.co/IjVf6S9lBv

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Today, we celebrate Labor Day and honor all those in our community who dedicate themselves with heart and passion to their work every day. Thank you for all you do and continue to make a difference! ❤️🤍💙

#LaborDay #LaborDayWeekend #LaborDay2026 #LongWeekend #EndOfSummer

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💙Chicago area families - Great Wolf here we come! 🎉 We’re excited to see you on 10/03/2026!

⏰Don’t miss these deadlines:
🎓Scholarship applications: Sept. 7
🏨Hotel group rates: Sept. 18

Join us for a day of connection and community! Learn more at https://t.co/szAAteqZAB

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What does a perfect day look like for your family? For Abby sometimes it’s a day by the pool - being together, making memories, and living in the moment.

💙 Share Your Story at https://t.co/MzIL4eNltU and help us celebrate those specail moments.

#NNPDF #ASMD #NPC #WeAreVisible

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Early answers can make a meaningful difference for families affected by rare diseases like ASMD and NPC. This Newborn Screening Awareness Month, we’re advocating for broader screening so more families can find answers, support and hope sooner.
#NewbornScreening #ASMD #NPC #NNPDF

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Today, on National Grief Awareness Day, we honor everyone in our community navigating grief. Know that you do not have to carry it alone. We stand beside you and continue showing up for one another - through every chapter.

#NationalGriefAwarenessDay #StrongerTogether #NNPDF

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From a Father’s Perspective: Caregiving, Advocacy, and Love
We’re sharing information about an upcoming CPN webinar on 09/23/2026 at 7:00PM ET where four fathers of children with medical complexities will share their caregiving experiences. Learn more at https://t.co/wy11CoPW31

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Caregiving happens in moments rarely seen - appointments, advocating, planning… in between, laughing, encouraging, and loving. To the caregiver, family member, and friend supporting someone with Niemann-Pick - WE SEE YOU. 💙 Tag a caregiver who deserves some appreciation today!

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One of the greatest strengths of the NNPDF community is how families support one another. If you could share one piece of advice with a newly diagnosed family, what would it be? Your words may be exactly what another family needs to hear.

💙 Share your advice in the comments.

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There’s something special about being in a room with people who understand. 💙
NNPDF Regional Family Events bring our ASMD and NPC community closer to home - creating opportunities to gather, learn, connect, and share. Join us! 💙
Learn more at https://t.co/31qgrFhkcq

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Stories have the power to create understanding and we're proud to support the upcoming Rare Disease Film Festival, now accepting film submissions. Consider sharing your story to help others better understand the rare disease experience. Learn more at https://t.co/7Anwnob98w

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NNPDF is excited to share that our Family Support & Medical Conference recordings are now available! Revisit a favorite session, catch up on one you missed, or explore the conference for the first time. Watch the recordings at your convenience at https://t.co/ZnRjlp5eaS

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National Institutes of Health (NIH) currently has two studies enrolling: NPC Whole Genome Sequencing Study and a Caregiver G-Tube Sub-Study that may interest our NPC community. Both are remote and free to participate in. Learn more about these studies at https://t.co/2HQH2yebSS

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Every conference. Family event. Fundraiser. Community gathering. They're possible because volunteers give their time, energy, and hearts. To every NNPDF volunteer - and our Board of Directors and Scientific Advisory Board - THANK YOU! 💙

Leave a 💙 to thank our volunteers!

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Research creates hope. Thank you to everyone helping move Niemann-Pick & ASMD research forward. 💙 Learn more about the research initiatives supported by NNPDF at https://t.co/8bYLfxBEah

#Research #NNPDF

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The Silver Shades may have been introduced this summer… but their story is just beginning.
Every pair represents a family.
Every family has a story worth sharing.

#BehindEveryPair