Non-profit discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Joined July 2020
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782 Photos and videos
Jun 12
We’re inviting the nano-rare community and its supporters to help create something meaningful for this year’s Colloquium.
✨ Make one bracelet or many
📬 Mail them to n-Lorem by Sept 25, 2026 or bring them with you to the colloquium
💌 Send us a message for mailing details.
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Jun 10
150 people have already registered for the 2026 n-Lorem Nano-rare Patient Colloquium—and the list keeps growing! 🚨
Don't miss two days of conversations, community, and collaboration October 7–8 at the Boston Marriott Cambridge or virtually.
Register: nlorem.org/2026-nrpc-registr…
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Jun 10
Announcing a partnership with @Servier! Through our expertise pioneering ASO technology and Servier’s R&D ability, this effort enables us to help more patients and support Servier’s initiative to develop innovative treatments for people living with rare neurological diseases.
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Lou Gehrig passed from complications related to ALS on June 2, 1941, but his legacy and the awareness he raised for ALS continues today. We honor nano-rare ALS patients like Bill O'Sullivan.
Tune in to the n-Lorem Patient Empowerment Program this summer: nlorem.org/media/podcasts/
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Understanding the intricacies of the RNA World allows for the creation of ASOs that have an influence on health and quality of life for nano-rare patients, making the RNA World a true miracle.
👉 Listen to the Miracles of Science: youtu.be/7SaeZnMN_J4
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n-Lorem Foundation provides experience in more than 300 patient applications and reports excellent safety profile and meaningful clinical benefit in treated patients receiving individualized ASO therapies.
👉 Read the study and see the results: nlorem.org/addressing-the-ne…
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May 27
100 registrations in under 24 hrs! 🚨
The excitement for the 2026 NRPC is already building. Join us Oct. 7-8 for two days of powerful conversations, community, and collaboration focused on nano-rare disease.
Register now: nlorem.org/nano-rare-patient…
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May 27
🧬 What exactly does RNA do inside our cells?
Dr. Stan Crooke further explores a detailed look at the miracle known as the RNA World and the science helping drive personalized treatments for nano-rare patients.
Listen here: youtu.be/8xVV2oe-MYo
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May 27
This is Turner 💙
Turner is a joyful teenager living with KIF1A Associated Neurological Disorder (KAND), a rare condition that brings daily challenges. We celebrate Turner, his mom Jenni and the family who support him every step of the way.
Donate today: nlorem.org/donate/
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May 26
The n-Lorem 2026 Nano-rare Patient Colloquium dates are set and registration is NOW OPEN!
Register today and stay tuned for agenda details: nlorem.org/nano-rare-patient…
#NRPC26
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May 25
This Memorial Day, we pause to honor and remember the brave men and women who made the ultimate sacrifice for our country.
Today also reminds us of the strength, resilience, and courage shown every day by nano-rare patients and their families as they face battles few can see.
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May 22
May is ALS Awareness Month.
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurological disease that affects the nerve cells responsible for controlling muscle movement. Over time, it can impact a person's ability to move, speak, eat, and breathe.
#ALSAwarenessMonth #ALS
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May 20
In the latest episode of the n-Lorem Patient Empowerment Podcast, Stan Crooke dives into the fascinating world of RNA biology, the battles that shaped modern genetic medicine, and how those discoveries are now bringing hope to nano-rare patients.
youtu.be/z58wKiN2WgE
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May 11
In May we recognize TUBB4A Awareness Month💙
TUBB4A-related leukodystrophy disorders are rare genetic conditions that affect the brain’s white matter, disrupting myelin sheath development. These conditions can impact movement, development, and coordination.
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Missed this joint @idtdna and n-Lorem Foundation webinar? You can now watch it ON-DEMAND! go.idtdna.com/ASO-screening.…
Learn why high throughput ASO screening is essential for developing effective therapies for nano-rare diseases and more!
Apr 27
TOMORROW! Join us for a joint webinar with @idtdna Principal Scientist Kim Lennox, MSc, and n-Lorem’s Assistant Director of ASO Strategy Research, Anthony Vu, PhD, as they explore antisense oligonucleotides (ASOs).
How to join:
Register here: go.idtdna.com/ASO-screening.…
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Join n-Lorem CEO Stan Crooke and Callan Pleasant for an heartfelt conversation about raising a child with HNRNPH2, a nano-rare disease.
Listen now!
youtube.com/watch?v=f6jk3zzr…
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Apr 29
Meet Annie 💙 Surrounded by love and cared for every step of the way, Annie’s story is one of resilience and hope. This Mother’s Day, honor families like hers and help carry hope forward.
Donate: nlorem.org/mothers-day-tote-…
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Apr 28
Meet Charlie 💙 Living with a rare condition, Charlie faces each day with strength and determination. This Mother’s Day, honor families like his and help carry hope forward.
Donate: nlorem.org/mothers-day-tote-…
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Apr 28
Today we recognize the individuals, families, researchers, and advocates working to raise awareness and advance research for the KIF1A community.
#KIF1A #RareDiseaseAwareness #RareDisease
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