In June, we launched Perlara On the Go, a monthly post updating you on upcoming events – be they conferences that Perlara team members are participating in, events that may be of interest to the life sciences community at large, or recaps of past events. Read on for Perlara On the Go December 2018!

 


Upcoming Events


Curing Pancreatitis – It’s time for a new approach webinar

December 8, 2018
12:00-12:45 EST

The 3rd in Mission: Cure’s patient webinar series, this webinar will feature co-directors Megan Golden and Linda Martin. who will discuss Mission: Cure’s strategy for developing disease-altering therapies for chronic and recurrent acute pancreatitis within 10 years – from collaborating with precision-medicine companies to identifying gene-specific treatments, as well as repurposing already-approved drugs. They will also discuss a new model for financing this research.

 


Recaps


 

2018 Global Genes Summit recap - 800x450px

2018 Global Genes Summit recap

Read Feba’s recap of the 2018 Global Genes RARE Patient Advocacy Summit, held in Irvine, CA, in October. This was the 7th annual gathering of rare disease patients, advocates, and researchers, and the largest gathering of the rare disease community worldwide.

 


Industry at Large


 

IAMRARE Registry Platform Virtual Demo

December 20, 2018
3:00 – 4:00 p.m.

Rare diseases present unique challenges for researchers and companies working towards treatments and cures. Small patient populations; Hard to diagnose or delayed diagnosis due to lack of education and understanding among medical professionals; Poor understanding of the natural history of the disease and its progression without intervention; No prior pathways to follow; Clinical endpoints that are often unclear; and enrollment and retention challenges. To address these special needs, NORD (National Organization for Rare Disorders) has created a Natural Histories Patient Registry Platform, with extensive input from FDA, NIH, patients, organizations and experts in the field. The IAMRARE Registry Platform is a system that allows organizations to rapidly launch a high-quality, customized registry to collect the data needed to define the natural progression of disease and advance product development.

 

Like being in the know about Perlara team members’ whereabouts and life science industry events? Look for Perlara On the Go at the beginning of each month!

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