Le Lézard
Classified in: Science and technology
Subjects: Contract/Agreement, Nonprofit

n-Lorem Foundation Collaborates with Across Healthcare to Develop a Custom Submission Platform for Physicians of Nano-rare Patients


n-Lorem, a nonprofit Foundation, has collaborated with Across Healthcare, a technology innovator, to develop a first-of-its-kind submission platform and system that allows research physicians from across the United States to submit applications for treatment for their patients with nano-rare illnesses. Robust data on each patient's genotype and phenotype is required to enable the decision as to whether their mutation will become a drug target in n-Lorem's discovery and development pipeline. As a non-profit, n-Lorem's mission is to discover, develop and provide treatment for free, for life to the nano-rare patients that are selected after a thorough internal and external application review process. This process includes a physician application for their patient, evaluation of the disease-causing genetic mutation and patient's clinical manifestations, and discussion with a team of external experts on the Access to Treatment Committee (ATTC) to make recommendations on acceptance.

"The n-Lorem team performs a comprehensive evaluation for every individual affected by a nano-rare mutation seeking treatment through our application platform. The ability to perform a robust evaluation is driven by comprehensive and quality data-this is how we determine whether we think we can help. In order to meet the needs of nano-rare patients today and scale to meet an even larger demand tomorrow, we have established an application system that was designed to streamline the application process and ensure that qualified research physicians are able to submit applications," said Sarah Glass, Ph.D., COO, n-Lorem Foundation.

n-Lorem's submission portal has been designed to accommodate an infinite number of applications over time. The user-friendly, custom platform enables each physician to create a personal account to be able to submit and track the progress of multiple applications. It has also been created to ensure each application comes from qualified physicians who are at institutions that are committed to treating a patient with an n-Lorem ASO. The platform and system have been designed to allow for real-time adjustments as n-Lorem's needs change and in the future will expand to accommodate clinical data as well.

"When n-Lorem approached us about their unique platform needs, we knew that we had to help," said Jason Colquitt, CEO, Across Healthcare. "Our dedication to rare disease communities coupled with our expertise in developing technologies that connect rare patients, caregivers, clinicians, and researchers, enabled us to develop a flexible platform tailored to meet n-Lorem's current needs and accommodate their future scalability as they extend their support to a growing number of nano-rare patients. Our entire team was enthusiastic about contributing to such a deserving organization."

"To date, we have evaluated more than 260 patient applications and have accepted more than 120 nano-rare patient programs, each application representing a potential new drug discovery effort," continued Dr. Glass. "Across Healthcare understood our unique needs and built an innovative platform that will continue to grow with us as we expand the number of people we are able to help. This will help streamline the review process we complete on each application because we know that they will be coming from physicians and institutions that can work with us to develop a personalized ASO therapy for their patient."

About Across Healthcare

Established in 2012, Across Healthcare has earned a reputation as a reliable partner, assisting numerous clients in conceptualizing, designing, and implementing cutting-edge technological solutions. With decades of collective healthcare and clinical research expertise spanning various disciplines, the Across Healthcare team excels in efficiently executing projects of any scale. CEO Jason Colquitt, himself a rare disease patient, held a vision to leverage the collective talents of the Across Healthcare team to serve the rare disease community. This vision materialized into the Matrix rare disease platform in 2014. Today, Matrix provides support to 95 rare disease groups and foundations, encompassing 236 rare conditions, and connecting patients and families across more than 120 countries.

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 more than 250 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. Follow us on Twitter, Facebook, LinkedIn and YouTube.

To learn more about n-Lorem's mission at www.nlorem.org, and please consider giving to n-Lorem to bring hope, possibility and treatment options to these patients and families in need.


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