What started as a napkin sketch on a slide proposing an international hub to advance individualized medicines has become a collaborative non-profit organization with hundreds of participants from around the world. This past year witnessed great progress assembling our community, securing seed funding and strengthening team infrastructure -- while advancing important conversations about best practices. We've been grateful for the participation of over 350 clinicians, researchers, biotechnologists, and families, representing >30 academic medical centers, 30 corporations, and 25 foundations across 12 countries. As we prepare for 2023, we are excited to shift our focus to more active engagement with the full N1C community, and to continue to lay a foundation for sharing data and learnings. In January, we will be kicking off a series of monthly seminars and case studies open to all N1C participants. We look forward to hearing your voices! Ramping Up N1C Engagement In 2023, we will be:
Expanding our seminar series with regular monthly programming that will include case conferences, workshops, and community discussions. Stay tuned for a calendar with more details in January. Please join us! If you are interested in presenting on a topic or discussing a (de-identified) case you are working on, please reach out to Erin McConnell at Erin@n1collaborative.org
Soliciting additional participants to N1C workgroups. Check out the topics we are focusing on and email Stefanie Leonard at Stefanie@n1collaborative.org if you are interested.
Hosting our first in-person meeting open to the entire N1C community at the end of 2023.
Sharing Learnings to Help the Field The N1C is committed to catalyzing sharing. Cross-cutting expertise -- genetic, computational, biological, chemical, clinical, ethical -- is required to bring individualized medicine to bear to treat disease, and is critical to continue to learn and improve. In the past year, we have been proud of N1C members’ publications on preclinical ASO design and screening and standards for patient selection, as well as contributions to important conversations about potential serious adverse events. We were also honored to have received a multi-year grant from the Chan Zuckerberg Initiative to begin construction of a central database to support data coordination efforts on a global scale, and have signed data sharing agreements with numerous academic medical centers and companies. Individualized Medicine in the News
New York Times: We Can Cure Disease by Editing a Person’s DNA. Why Aren’t We?
New York Times: They Created a Drug for Susannah. What about Millions of Other Patients?
Neurology Today: Hopes for Antisense Oligonucleotides Remain Strong Despite Severe Adverse Events in Trials
There's much more to come in 2023, including continuing to promote the importance of open sharing, expanding our data sharing commitments, and continuing to promote vibrant discussions on topics critical to the field. Stay tuned! Here’s to an exciting new year of collaboration and forward movement! - The N1C Team
We envision a future where individualized medicine centers around the world routinely offer patients customized treatments targeting their condition’s underlying genetic cause.