N-Lorem Foundation

N-Lorem Foundation Creating a better future for nano-rare, one patient at a time.

Biogen is a leading biotechnology company that pioneers innovative science to deliver new medicines to transform patient...
06/23/2026

Biogen is a leading biotechnology company that pioneers innovative science to deliver new medicines to transform patients’ lives and to create value for shareholders and our communities.

Thank you, Biogen, for your steadfast commitment to n-Lorem, to nano-rare patients, and for once again hosting this year's Nano-rare Patient Colloquium!

The 2026 Nano-rare Patient Colloquium is coming soon! Join us October 7-8 in Cambridge, MA. Register for free to attend in person or virtually: https://www.nlorem.org/nano-rare-patient-colloquium-2026/

Facioscapulohumeral Muscular Dystrophy (FSHD) is a rare genetic condition that causes progressive muscle weakness, often...
06/20/2026

Facioscapulohumeral Muscular Dystrophy (FSHD) is a rare genetic condition that causes progressive muscle weakness, often affecting the face, shoulders, and upper arms.

On World FSHD Day, we recognize the individuals and families living with FSHD and the researchers, clinicians, and advocates working to advance understanding and potential treatments.

06/17/2026

A powerful conversation on ALS, genetics, and personalized medicine.

In this episode of the n-Lorem Patient Empowerment Podcast, n-Lorem patient Bill O’Sullivan and Dr. Neil Shneider discuss CHCHD10-related ALS, diagnosis, and early experience with a personalized A*O therapy.

Now streaming: https://youtu.be/TtLH3LpfJvs

🎨 Our Nano-rare Patient Art Auction is returning to the 2026 Nano-rare Patient Colloquium! Are you, or do you know, an n...
06/12/2026

🎨 Our Nano-rare Patient Art Auction is returning to the 2026 Nano-rare Patient Colloquium!

Are you, or do you know, an n-Lorem nano-rare patient who would like to contribute an artwork to be auctioned in support of our mission?

Due to space limitations, we are able to feature a maximum of 36 artworks this year. If you are interested in participating, please email [email protected] by Friday, June 26. We would be happy to send a custom art canvas and provide additional information.

Artwork spots will be reserved on a first-come, first-served basis, so we encourage interested families to respond early.

This can be a wonderful summer activity for patients and families, as completed artworks will need to be returned to n-Lorem by July 31.

We look forward to hearing from you and celebrating our talented artists at the Colloquium!

🧡 Join the Nano-rare Friendship Bracelet Project 🧡 We’re inviting the nano-rare community and anyone who supports it to ...
06/12/2026

🧡 Join the Nano-rare Friendship Bracelet Project 🧡

We’re inviting the nano-rare community and anyone who supports it to help create something meaningful for this year’s Nano-rare Patient Colloquium.

Inspired by friendship bracelets that have brought people together around the world, patients, families, advocates, physicians, researchers, friends, and supporters are invited to create handmade friendship bracelets that will be sold during the nano-rare Patient Colloquium on October 7–8.

Each bracelet represents connection, hope, and the power of a community united in support of those living with nano-rare disease.

Need inspiration?

🧡 Words of hope and encouragement
✨ HOPE, COURAGE, STRONG, TOGETHER, ADVOCATE, SCIENCE, RARE
🎗️ Disease-specific colors or messages
🌟 Designs that reflect your unique connection to the community

✨ Make one bracelet or many
📬 Mail them to n-Lorem by Sept 25, 2026 or bring them with you to the colloquium

All proceeds will support n-Lorem and its mission to serve nano-rare patients and families.

💌 Comment below or send us a message for mailing details.

150+ people have already registered for the 2026 n-Lorem Nano-rare Patient Colloquium—and the list keeps growing! 🚨 Don'...
06/10/2026

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 meaningful conversations, community, and collaboration October 7–8 at the Boston Marriott Cambridge or virtually.

Register today: https://www.nlorem.org/2026-nrpc-registration/

n-Lorem is proud to announce a partnership with Servier. Through our expertise pioneering antisense oligonucleotide (A*O...
06/10/2026

n-Lorem is proud to announce a partnership with Servier. Through our expertise pioneering antisense oligonucleotide (A*O) technology and Servier’s research and development ability, this multi-target collaboration will enable n-Lorem to help more patients and support Servier’s initiative to develop innovative treatments for people living with rare neurological diseases.

Read more about the partnership: https://www.prnewswire.com/news-releases/servier-and-n-lorem-foundation-join-forces-to-advance-research-in-rare-neurodevelopmental-disorders-302795477.html

Lou Gehrig passed from complications related to ALS on June 2, 1941, but his legacy and the awareness he raised for ALS ...
06/04/2026

Lou Gehrig passed from complications related to ALS on June 2, 1941, but his legacy and the awareness he raised for ALS continues today. June 2 is Lou Gehrig day, and n-Lorem is proud to raise awareness of this day and is honored to support nano-rare ALS patients, including Bill Osullivan who was chosen to participate in MLB pregame earlier this week. Want to know more about Bill and his journey on n-Lorem treatment?

Tune in this summer for his podcast on the n-Lorem Patient Empowerment Program (https://www.nlorem.org/media/podcasts/)

06/03/2026

Why should you be interested in the RNA World? Something so small you can’t even see it with the bare eye. Well, that tiny ribonucleic acid has a big impact, and understanding the intricacies of the RNA World allows for the creation of A*Os 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: RNA World finale using the link in bio!

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