Panel:

Hope realized; the culmination of effort, perseverance and belief in a better outcome

Our pioneering patients are paving a pathway for more nano-rare patients, providing valuable information on health and disease and experiencing, for the first time, targeted therapeutic intervention for their genetic conditions.  Please join us as we hear their diagnostic stories from the patients and their families.  We will follow these with case reports on these patient’s clinical experiences presented by the physicians who are so committed to caring for these patients.  This panel will feature four different patient/physician interviews that will be conducted by Brady Huggett and will be dispersed throughout the day and a half event. 

Panel:

What it means go be a partner with n-Lorem for nano-rare

The challenges presented by nano-rare patients are far too complex for n-Lorem to solve even a fraction of the issues without support. Thus, our goal from inception has been to build as broad and effective a network of contributing stakeholders. In this panel, our partners in our community of care discuss what it means to be a partner with n-Lorem, including how partnering with n-Lorem provides their employees with a feeling of purpose and what more their organization can do to support nano-rare. This panel will feature executives from n-Lorem partners and supporters who believe in the mission and are committed to helping n-Lorem reach even more patients. 

Panel:

Building a nano-rare network and managing institutional challenges

Creating, developing and providing an individualized/personalized ASO medicine for an individual patient is only part of the challenge that faces n-Lorem and our patients today.  Our physicians and institutional partners are key to ensure that not only are our patients cared for, but that they can access the treatments we offer.  We are continually expanding our network to bring more physician and institutional partners together to work with us in getting our nano-rare patients the treatments that could change their lives.  This panel will include physicians from across the US to discuss their unique challenges and some of the innovative ways they have garnered institutional support for their patients. 

Panel:

Innovative ways to support nano-rare

As n-Lorem scales to meet an ever-growing demand, new challenges arise.  Many of these challenges will take innovative solutions and support from leaders and experts in a variety of different fields.  Together as a community, we are creating a path forward for nano-rare patients and changing the way that genetic diseases are treated.  This panel brings together leaders and experts in areas where significant challenges exist to brainstorm how to overcome these challenges and advance treatments for even more nano-rare patients. 

Panel:

The perilous journey to diagnosis and treatment for nano-rare patients

This panel is back by popular demand.  n-Lorem exists to serve the nano-rare patient community. The opportunity for ASO treatment provides hope to the hopeless and eventually, we hope, treatments for many. Hopelessness and despair that come at the end of a long and perilous journey to diagnosis are devastating. In this special panel, some of our nano-rare patients share their diagnostic odysseys and what n-Lorem means for them.  We will meet and learn about more nano-rare patient journeys to n-Lorem and the hope that n-Lorem brings to them and their families. 

Panel:

Changing the world one patient at a time

At the onset, we wanted to engage renowned leaders in their fields to provide expert guidance as we navigate new territory, nano-rare.  We believe that every patient deserves to have the best minds coming together to help them.  Our experts donate their time, their expertise and their insight for our patients and help us by serving on a number of committees that provide expert advice and guidance across all steps of the treatment pathway.  In this panel, our experts sit down to discuss why they believe in n-Lorem and together how we are truly changing the world one patient at a time.