n-Lorem Foundation

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

Listen to the concluding episode of the Knowledge is Power series. The information we are gaining at n-Lorem has even more value than benefiting nano-rare patients and their families. These insights will enable scientists to discover new therapeutic targets for both common and rare diseases, fundamentally changing the way we approach health and disease. https://lnkd.in/geDGVtVe

Diagnosed with a rare SCN2A gene mutation, Connor has experienced hundreds of seizures daily as an infant. After years of searching, whole genome sequencing has finally provided answers. Thanks to n-Lorem Foundation and funding from CIRM, Connor is now receiving personalized therapy that is bringing new hope and progress to his life. #RareDiseases #GeneticTherapy #GenomeSequencing #NeurologicalDisorders #PatientStories

We're currently out of office... but we'll be back tomorrow 😊 Wishing you a Happy Labor Day! A heartfelt thank you to all members of our nano-rare community, n-Lorem staff, research physicians, study teams, and partners. Your efforts are invaluable to n-Lorem and our patients!

Alexion, AstraZeneca Rare Disease, a leader in rare diseases for more than 30 years, joins us in support of the 2024 Nano-rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, Alexion, 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 Alexion Pharmaceuticals, Inc.

CureDRPLA, a non-profit connecting families, physicians and scientific investigators to further DRPLA research and work towards a treatment for DRPLA, joins us in support of the 2024 Nano-rare Patient Colloquium on October 30-31 in Cambridge, MA. Thank you, CureDRPLA, 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

In case you missed the latest episode of the Patient Empowerment Program. The knowledge we are gaining at n-Lorem has even more value than benefiting nano-rare patients and their families. These insights will enable scientists to discover new therapeutic targets for both common and rare diseases, fundamentally changing the way we approach health and disease. Stream Part 1 of Knowledge is Power now. https://lnkd.in/gHwembvP