SAN DIEGO--(BUSINESS WIRE)--n-Lorem, a nonprofit foundation, celebrates a year of connecting with the nano-rare community through its patient advocacy initiative referred to as the ‘Patient Empowerment Program.’ A substantial component of this initiative is the podcast series hosted by Stan Crooke that was launched in May 2022. Through this podcast, n-Lorem is fostering a community for nano-rare patients by supporting and empowering them as they navigate understanding their disease. n-Lorem is a non-profit foundation discovering, developing and providing personalized experimental antisense oligonucleotide (ASO) medicines for nano-rare patients (1 to 30 patients worldwide) for free, for life.
“When I began the podcast program, my goal was to empower and educate our patients and other interested parties by providing a basic understanding of health, disease and treatments. We appreciate our sponsors and partners whose support allows us to continue to produce and offer these important discussions within the nano-rare disease community,” said Stanley T. Crooke, M.D., Ph.D., Founder, chairman and CEO, n-Lorem Foundation. “As we begin our second year of the Patient Empowerment Program, we are leveraging this powerful tool to improve our communication with patients, physicians and the community. We recently launched our first community Q&A podcast that has been very well received. We look forward to more Q&A formats as the year progresses so that we can continue to provide information to our community.”
“We are thrilled with the community’s response to the podcast series. We have published more than 25 episodes and are looking forward to at least that many more over the next 12 months. Our listener comments are overwhelmingly positive, our engagement rate has increased dramatically over the last year and the number of podcast downloads has exceeded 5,000. Both the interviews and basic lessons have been very well received,” said Amy Williford, Ph.D., Sr. director of communications, n-Lorem Foundation.
The podcast series titled ‘The Patient Empowerment Program’ is hosted by n-Lorem CEO and Founder, Stanley Crooke, focuses exclusively on nano-rare patients and includes a variety of interviews and lessons that try to fill the knowledge and information void about the nature of nano-rare mutations and diseases. To date, more than 20 episodes have been released with new episodes releasing every other Wednesday. The podcast series now has three categories of content:
- Interviews: more than 10 episodes of interviews with leading physicians, scientists, biotechnology leaders, rare disease advocates and patients and their families have been released.
- Introduction to medical science lessons: more than 10 episodes that simplify the terminology and rationale behind drug discovery and development, what particular organs do in the body and where they can cause disease, and how to think about drugs and their effect on our bodies. These lessons are meant to provide a basic understanding of many of the topics that nano-rare patients face as they advocate for themselves and their families.
- New Format: Community Q&A. In this new format, Stan will discuss concerns from the nano-rare community with leaders from these communities, including parents, disease foundation representatives, research and treating physicians and others. The first Community Q&A was released in April 2023, with more to come.
“Additionally, this year, we will be adding a focused series to our podcast format that will provide greater detail on the quality drug discovery and development processes we have created at n-Lorem. In this new series, I will discuss why each step in the creation and evaluation of an experimental ASO is critical, what is learned in the identification of an optimal ASO, why it is so important and present case studies that illustrate how complex and difficult it is to mount an individualized drug discovery and development program,” concluded Dr. Crooke. “We hope that through this podcast program, our patients are empowered and feel supported by n-Lorem, our partners and the nano-rare community.”
Listen today to the Patient Empowerment Program podcast by visiting www.nlorem.org or find them on any podcast listening app. Episode notes for all released podcasts can be found on the n-Lorem website by visiting www.nlorem.org/media/podcasts. New episodes will be released every other Wednesday each month. Be sure to subscribe, rate and review.
Learn more about the exciting progress n-Lorem has made by reading Stan Crooke’s annual letter and visit n-Lorem’s new website.
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.
- Watch: n-Lorem Foundation Delivers Hope and Treatment for Patient with Nano-Rare Disease
- Watch: n-Lorem Foundation: Creating a Better Future for Nano-Rare, One Patient at a Time
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 has assisted in the development and treatment of 14 nano-rare patients and received over 190 applications for treatment with more than 90 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.