💙 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
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
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.🩵
💙 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
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! t.ly/NNPDF-NEWS-Oct2026
💙 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
🚨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: t.ly/NNPDF-Toolkit&WebsiteLa…
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 nnpdf.org.
#NiemannPickAwarenessMonth
💙 A Perfect Day with Abby can be as simple as pool time, a popsicle, and going to middle school. During #NiemannPickAwarenessMonth, we’re reminded that extraordinary moments can come from little things that bring us joy with the people we love. 🌞
Watch: vimeo.com/1237730051
🔬 Why does research matter in Niemann-Pick disease? Alec’s story highlights the impact of research and collaboration. Thank you to Notre Dame and the Ara Parseghian Medical Research Fund for helping advance progress. 💙
🎥 youtube.com/shorts/dIwnyFmrQ…
#NiemannPickAwarenessMonth
🩵 For Tonya, #APerfectDay means one more day with her precious daughter Julia, who passed away after a courageous battle with NPC. Perfect days are sometimes simply about more time with the people we love.
Learn more at nnpdf.org.
#NiemannPickAwarenessMonth #NPC
📣 We're excited to invite you to Community Update Webinar celebrating 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: t.ly/NNPDF-Toolkit&WebsiteLa…
🌎 Today we stand together for Global Niemann-Pick Disease Awareness Day. Behind every diagnosis is a person, a family, a story, and moments that matter. 💙
🕶️ Put on your shades, share on social media, and tag NNPDF.
#NiemannPickAwarenessDay #Global #BehindEveryPair #ASMD #NPC
ASMD is a rare inherited lysosomal storage disease that can affect multiple systems in the body, requires specialized care. Throughout Niemann-Pick Awareness Month, we'll be sharing information, voices and experiences of our community.💙
Learn more: vimeo.com/1236310577
💙 “Treat her like she's a person.” Sometimes, the most powerful messages come from the youngest voices. Emily McGlocklin shares what daily life looks like with her sister, Marion, who lives with Niemann-Pick type C (NPC). Watch her message at vimeo.com/1236309580
New research offers encouraging news - Beren Therapeutics has shared new adrabetadex data showing preservation of neurological function for more than 10 years in children with infantile-onset NPC. Read more at t.ly/kcqaR
#NiemannPick #NPC #NNPDF @BerenTherapeutics
OCTOBER 15 | SHINE A LIGHT as part of the Global Wave of Light honoring those affected by Niemann-Pick disease.
🕯️ 7:00 p.m. your local time, light a candle
💙 Share a photo/video of your light
🌎 Use #LightForNiemannPick
One Community. One Light. One World United in Hope.
NNPDF is excited to share FDA’s new Rare Disease Framework! This represents an encouraging step toward more flexible regulatory pathways that recognize the unique challenges rare diseases face. Every patient matters, and time matters.
Learn more at t.ly/FDA-RareDiseaseFramewor…
