Month: December 2015

 A New Era, Creating A New Model

The launch of the Amyloidosis Research Consortium (ARC) earlier this year was in direct response to this pivotal moment in the history of amyloidosis. With potentially effective therapies for amyloidosis on the horizon, the ARC is changing the way research is executed and driving faster results.

ARC has created the optimum model to prioritize and advance the best research. Here is how we are affecting change.

SHINING A BRIGHT LIGHT on amyloidosis through our strategic awareness programs has resulted in a better understanding of where the diagnosis is consistently missed.  By working with experts in healthcare, research and industry we are developing tools to expedite diagnosis and treatment. As a result of our work, amyloidosis is receiving more attention than ever at major medical meetings, both in the U.S. and abroad.

CREATING A PATHWAY for more efficient and successful amyloidosis initiatives by partnering with industry, healthcare professionals, patients and the FDA.  Through our ongoing work with the FDA, ARC’s critical guidance document will result in more effective drug development programs.

SETTING THE GOLD STANDARD and a new model for how other rare disease groups will deliver their needs and stories at future patient focused forums with the FDA.  The patient forum has not only given the FDA an important understanding of amyloidosis patients and the burden of the disease, but also defined what is meaningful in treatments for patients.

REFORMING RESEARCH by creating a clinical trial network that breaks down the partition between research centers. Our focus is on team science, bringing the brightest minds in amyloidosis together to forge scientific advances to expedite clinical trials.  Our aim is to produce the greatest potential for amyloidosis patients.

QUICK RESPONSE to treatment or disease progression is vitally important to see, and biomarkers can do just that. The use of these biomarkers can dramatically reduce trial times. The ARC is committed to research in this area and has authored a biomarker white paper, identifying amyloidosis specific biomarkers. There has been much attention given to the work the ARC has done in this area. We are working closely with the FDA on pathways to approval for these specific biomarkers for amyloidosis.

ARC in 2016

Advancing Aggressive And Timely Programs

SPEEDING DEVELOPMENT of a new and innovative clinical trial finder tool that will guide patients to core treatment centers and facilitate enrollment in clinical trials.  This has the potential to dramatically improve the ways in which trials are conducted.

CREATING A CRITICAL RESOURCE by developing a database for the collection of high-quality patient data that will deepen our understanding of the disease. Amyloidosis is different for each patient so we must build a critical mass of data. Collecting and processing high-quality data is essential for us to uncover more targets, more biomarkers, more pathways, and more patient subtypes to tailor solutions.

Call to Action

These aggressive and timely initiatives require resources in order to deliver the projects that have the potential to positively impact this challenging and life-threatening disease. The money you contribute helps us to accelerate effective research, speed clinical trials, and swiftly obtain FDA approvals. We don’t have the luxury of time.

And We Can’t Do It Alone! Please give as generously as you can at www.arci.org/donate

Together we will make a difference.  Thank you for your support and HAPPY NEW YEAR to all!