New website features patient, physician and institution pathways and n-Lorem’s Patient Empowerment Program and provides access to and information on the n-Lorem pathway to treatment
SAN DIEGO–(BUSINESS WIRE)–#ASO—n-Lorem Foundation, a nonprofit dedicated to providing experimental antisense oligonucleotide (ASO) medicines for nano-rare patients (1 to 30 patients worldwide) for free, for life, today announced that is has launched a new website to better serve patients, physicians and donors seeking information about the organization and how n-Lorem is helping patients with rare genetic illnesses.
n-Lorem’s new website was designed to support nano-rare patients and their families by providing an extended community empowered through shared experiences, community action and resources to better understand their disease and their healthcare choices. This includes n-Lorem’s patient advocacy initiative referred to as the ‘Patient Empowerment Program’, which includes a podcast series that has over 20 published episodes with more than 3250 downloads. Through this program, n-Lorem is fostering a community for nano-rare patients by supporting and empowering them as they navigate understanding their disease.
In addition to an online community for its nano-rare patients, the new website provides a broadly accessible resource for treating physicians and institutions that highlights the ASO discovery and development process, provides detailed guidance for submitting physicians who want to nominate their patient for treatment and sets expectations of institutions that want to partner with n-Lorem for the treatment of n-Lorem’s nano-rare patients. Visitors can also find information on who might qualify for treatment and how a treating physician can apply for the program.
The website was created in conjunction with San Diego-based branding agency Lift (www.liftsd.com), one of n-Lorem’s many partners that help support the Foundation’s efforts to provide experimental antisense oligonucleotide (ASO) medicines to nano-rare patients for free, for life.
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.
- Subscribe: n-Lorem Patient Empowerment Program Podcast Series
- 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
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 160 applications for treatment with more than 80 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
n-Lorem Contact:
Amy Williford, Ph.D.
Director of Communications
amy.williford@nlorem.org