SAN DIEGO, Calif. — n-Lorem, a nonprofit foundation, has announced the dates for its second annual Nano-rare Patient Colloquium, which will be held Oct. 30 & 31 in Cambridge, Mass. The Nano-rare Patient Colloquium will bring together a Community of Care for Nano-rare that consists of treating physicians, industry leaders, corporate, foundation and individual supporters, the n-Lorem team and most importantly, nano-rare patients and their families.
“At this second annual meeting, we are pleased to share our progress, our aspirations and the important lessons we are learning from our patients, which we believe will reshape how we think about health and disease,” said Stanley T. Crooke, M.D., Ph.D., Chairman, Founder, and CEO, n-Lorem Foundation.
The 2023 Nano-rare Patient Colloquium was the first of its kind with nano-rare patient families and more than 20 panelists and presenters who led informative discussions on a host of topics critical to the nano-rare patient community. The n-Lorem team presented on various facets of the organization from drug discovery and development for nano-rare to the professional clinical management of nano-rare patients on treatment. The event was well attended both in person and virtual. In addition, since Oct 2023, the posted videos of the presentations and panels from the colloquium have garnered more than 2300 views highlighting the significant interest in these important topics. For the 2024 Nano-rare Patient Colloquium, n-Lorem will continue to guide these important discussions that affect the nano-rare community and bring nano-rare patient stories to the forefront of any discussion.
“With every nano-rare patient, we have an extraordinary opportunity to learn more about the unique nature of these genetic-based diseases,” concluded Dr. Crooke. “What we discover from a single patient helps us advance care for all, and we owe it to our patients to learn as much as possible about these illnesses. We believe that if we provide a new future to one patient, one family at a time, we change the world.”
Interested parties can register for the 2024 colloquium by going to the n-Lorem website.
Biogen will be hosting the colloquium, but n-Lorem is looking for additional sponsors. If you or your company is interested in sponsorship opportunities, please email Amy Williford.
About n-Lorem
n-Lorem Foundation is a non-profit organization established to apply the efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat nano-rare patients diagnosed with diseases that are the result of a single genetic defect unique to only one or very few individuals. Nano-rare patients describe a very small group of patients (1-30 worldwide) who, because of their small numbers, have few if any treatment options. n-Lorem Foundation was created to provide hope to these nano-rare patients by developing individualized ASO medicines, which are short strands of modified DNA that can specifically target the transcripts of a defective gene to correct the abnormality. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. To date, n-Lorem received over 260 applications for treatment with more than 120 nano-rare patients approved. n-Lorem was founded by Stanley T. Crooke, M.D., Ph.D., former chairman and CEO of Ionis Pharmaceuticals, who founded Ionis Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics.
Contacts
Amy Williford, Ph.D.
Sr. Director of Communications
[email protected]