n-Lorem Foundation

Last year’s Nano-rare Patient Colloquium was truly one-of-a-kind, and we are excited to expand this event and share two special days with you. Together, we’ll review the progress n-Lorem has made as we continue to grow our foundation, we’ll share new developments and explore where we aim to go in the future. We'll dive into the knowledge we've gained at n-Lorem, the ways we're enhancing our processes, and present case studies that highlight both the challenges and success stories in discovering and developing personalized ASO medicine for a patient of one. Our patient families will share their diagnostic odysseys and clinical experiences, while our partners will discuss how supporting nano-rare initiatives has enriched their company culture. Our supporters will address the growing challenges ahead as more nano-rare patients come to n-Lorem for help. Research physicians from various institutions across the country will provide insights into what we’re learning about neurological diseases—plus much more!   Visit the link below to register and view full agenda details including speaker information and biographies. Can’t join us in-person? Register to attend virtually! https://lnkd.in/gv4AQGjQ

One of Ethan’s favorite movies is Up by Pixar and we wanted to carry that theme into his painting. He’s become quite good at using the Bingo ink stamper, which he used to help create all the balloons.

What masterpieces! 🎨 A few months ago, we posted to our channels that we were looking for patient artists who wanted to participate in our art auction fundraiser by providing paintings to help support n-Lorem and nano-rare patient programs. Well, these patient artists delivered! Now it’s your turn 😊 YOU can bid on pieces of art handcrafted with hope by n-Lorem patients. Get those wallets and purses ready – it's for a potentially life altering cause! Swipe to see available paintings and check our social media in the coming days as we continue to unveil more of these incredible pieces or visit our website to view the entire gallery and start bidding today! https://lnkd.in/gnGqebWr   The Nano-rare Patient Art Auction Ends Thursday, October 30 @ 7:00pm ET  These art pieces will be displayed at the upcoming 2024 Nano-rare Patient Colloquium in Cambridge, MA, While the auction will conclude during the Colloquium reception, you don’t have to be in attendance to bid, run up the price, or win! We sincerely thank you in advance for participating, as this auction supports an extraordinary mission that is transforming the world, one patient at a time.

Nitto Avecia provides n-Lorem manufacturing support through its contributions of active pharmaceutical ingredients (API) and drug product for individualized ASO medicines. They will join us in support of the 2024 Nano-Rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Nitto Avecia, for your commitment to n-Lorem and our nano-rare patients!    This year’s colloquium will be a multi-day summit bringing together patients, physicians, institutional representatives, partners, and supporters to create a strong, cohesive, empathetic and knowledgeable nano-rare community. Open to all – register for free! #NRPC24    https://lnkd.in/gv4AQGjQ  

Bachem, a leading, innovation-driven company specializing in the development and manufacture of peptides and oligonucleotides, joins us in support of the 2024 Nano-Rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Bachem, for your commitment to n-Lorem and our nano-rare patients!    This year’s colloquium will be a multi-day summit bringing together patients, physicians, institutional representatives, partners, and supporters to create a strong, cohesive, empathetic and knowledgeable nano-rare community. Open to all – register for free! #NRPC24    https://lnkd.in/gv4AQGjQ  

🌟 Breaking New Ground in Nano-Rare Disease Treatments 🌟 Researchers are pushing boundaries with cutting-edge antisense oligonucleotide (ASO) therapies to treat nano-rare conditions, offering fresh hope to patients often overlooked. One such case study, spearheaded by the n-Lorem Foundation, is a shining example of innovation in action. We're thrilled to announce that Stanley Crooke, Founder & CEO of n-Lorem Foundation, will be a keynote speaker at TIDES Europe 2024! 🎤 📍 Join us in Hamburg, Germany, 12-14 November at the Hamburg Congress Center to hear from Stanley and other pioneers in drug discovery. https://lnkd.in/ej8vv4r 🔗 Learn more about Stanley’s session: https://lnkd.in/e9Z9Mx7k ✉️ Stay in the know! Sign up for our bi-weekly newsletter: https://lnkd.in/ebHn89RP 📚 Discover more articles: https://lnkd.in/egjF5Rsb

Rescue 7 Firefighters for Patients supports non-profits and advocacy groups through charity events rooted in the deep traditions of New York State Fire Departments. They will join us for the 2024 Nano-Rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Rescue 7, for supporting our event and for your commitment to n-Lorem and our nano-rare patients! This year’s colloquium will be a multi-day summit bringing together patients, physicians, institutional representatives, partners, and supporters to create a strong, cohesive, empathetic and knowledgeable nano-rare community. Open to all – register for free! #NRPC24 https://lnkd.in/gv4AQGjQ

Takeda, a pharmaceutical company focused on creating better health for people and a brighter future for the world through discovering and delivering life-transforming treatments in core therapeutic and business areas, including gastrointestinal and inflammation, rare diseases, plasma-derived therapies, oncology, neuroscience and vaccines, joins us in support of the 2024 Nano-rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Takeda, for your commitment to n-Lorem and our nano-rare patients!   This year’s colloquium will be a multi-day summit bringing together patients, physicians, institutional representatives, partners, and supporters to create a strong, cohesive, empathetic and knowledgeable nano-rare community. Open to all – register for free! #NRPC24 

📢 Leavitt Partners is honored to announce the launch of the new Genomic Answers for Children's Health Alliance (gachalliance.org) -- a rare disease policy collaboration committed to working with Congress and federal health policy stakeholders to effectuate a national Medicaid coverage standard for genomic sequencing for kids with rare diseases. 🧒Together, we can shrink the diagnostic odyssey, help equip clinicians with actionable clinical insight, give parents and families peace of mind, leverage insights for rare disease research, reduce racial and ethnic disparities in access to sequencing, and improve outcomes for children with rare diseases. 🤝 Alliance partnering organizations include Ambry Genetics, Baylor Genetics, COMBINEDBrain, Concert, Corewell Health, Simon Frost with HOPE for Annabel, Innovative Genomics Institute, Illumina, The Jackson Laboratory, Oxford Nanopore Technologies, Rady Children's Institute for Genomic Medicine, Undiagnosed Diseases Network Foundation (UDNF), Children's Minnesota, Global Genes, Nemours, n-Lorem Foundation, and Texas Rare Alliance. 🙋♀️🙋♂️With Clay Alspach, Melissa Pfaff, Tanner Fliss, MPH, Greg Nogle, Jonathan Vasquez, Terry Jo Bichell, Gillian Hooker, Caleb Bupp, Simon Frost, Alexander Ehrenberg, John Fox, Nick Magallanes, Jill Homer Stewart, Cat Lutz, Kathleen C. Barnes, Russell Nofsinger, F. Sessions Cole, Charlene Son Rigby, Daniella Gratale, Amy Williford, and Khrystal K. Davis. Alliance: https://gachalliance.org #RareDisease #PatientVoice #GenomicSequencing #AnswersForChildrensHealth

Cytiva, a global life sciences leader, donated manufacturing equipment that empowers n-Lorem to enhance efficiency and accelerate processes. They will join us for the 2024 Nano-Rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Cytiva, for your commitment to n-Lorem and our nano-rare patients! This year’s colloquium will be a multi-day summit bringing together patients, physicians, institutional representatives, partners, and supporters to create a strong, cohesive, empathetic, and knowledgeable nano-rare community. Open to all—register for free! #NRPC24 https://lnkd.in/gv4AQGjQ