n-Lorem Launches its Patient Empowerment Program to Support Nano-rare Patients and Their Families

n-Lorem Launches its Patient Empowerment Program to Support Nano-rare Patients and Their Families




n-Lorem Launches its Patient Empowerment Program to Support Nano-rare Patients and Their Families

Program includes new podcast series of informative interviews with thought leaders and lessons from basic science through the continuum of drug development.

SAN DIEGO–(BUSINESS WIRE)–n-Lorem, a nonprofit foundation, launches its patient advocacy initiative referred to as the ‘Patient Empowerment Program,’ with the release of its new podcast series. Through this program, n-Lorem hopes to foster 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.

“One is a lonely number and most nano-rare patients are exactly that, the single patient in the world with their unique mutation and disease. Whether a nano-rare patient is truly an n-of-1 or a member of a tiny patient population, that patient is entirely isolated. To support these patients and their families, we are creating a community of care, a forum in which our nano-rare patients can share their diagnostic journeys and their hopes that, through n-Lorem, they will have the ultimate personalized treatment developed for their unique disease,” said Stanley T. Crooke, M.D., Ph.D., Founder, CEO and Chairman of n-Lorem Foundation.

In the podcast series, n-Lorem CEO and Founder, Stanley Crooke, will host a variety of interviews with leading physicians, scientists, biotechnology leaders, rare disease advocates and patients and their families. Stan will also host a series of lessons meant to empower through knowledge on such topics as what is a drug, what does a particular organ do, what is antisense and what are biological and chemical systems, to name a few. These lessons will provide basic understanding of many of the topics that nano-rare patients face as they advocate for themselves and their families.

“We call this initiative our Patient Empowerment Program because we hope that is exactly what it does, empower and support our nano-rare patients. This program includes the podcast series we are launching today that focuses exclusively on nano-rare patients and includes a variety of interviews and lessons that will try to fill the knowledge and information void about the nature of nano-rare mutations and diseases,” continued Dr. Crooke.

Listen today to the first three episodes of the Patient Empowerment Program podcast by visiting www.nlorem.org or find them on any podcast listening app. New episodes will be released every second and fourth Wednesday each month. Be sure to subscribe, rate and review.

  • Episode #1: Path to n-Lorem: Susannah’s Story
  • Episode #2: What is n-Lorem?
  • Episode #3: Biological Systems and Chemical Networks

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 needy patients and families.

  • Watch: n-Lorem Foundation: Offering Hope and Help to Nano-rare Patients
  • Watch: n-Lorem Foundation: Creating a Better Future for Nano-Rare, One Patient at a Time

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 has assisted in the development and treatment of 14 nano-rare patients and received over 130 applications for treatment with more than 50 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, YouTube and Instagram.

Contacts

Amy Williford, Ph.D.

Sr. Director of Communications

amy.williford@nlorem.org