Press Release: Paul Schindler Joins Rare Genomics Institute as New Executive Director

Paul Schindler Joins Rare Genomics Institute as New Executive Director

Successful entrepreneur and nonprofit industry veteran tasked with bringing RG to new level in fight against rare diseases worldwide

 Washington, D.C. March 2014. Rare Genomics Institute (RG), the leader in precision genomic research and patient advocacy, announced today that Paul Schindler has joined the nonprofit organization as its Executive Director and CEO.  In this new role, he will be managing RG operations and working with key rare disease stakeholders to promote awareness of RG’s unique and powerful approach to helping patients with rare and undiagnosed diseases.

“Over the last four years RG has been expanding its international research network and building infrastructure,” said Jimmy Lin, MD, PhD, MHS, President of RG. “Now the time has come to supplement our research expertise with effective management. We are thrilled to have Paul Schindler on board: his business acumen and impressive nonprofit track record will help taking RG to an entirely new level.”

The company’s latest developments include patient consultation post sequencing and launching a social networking site aimed at using the power of the internet to link people and medical professionals globally around their personal area of rare disease.  RG’s footprint has expanded to over a dozen international markets and has more than quadrupled their staff last year. This has allowed them to help hundreds of families with rare diseases and award hundreds of thousands of dollars of research.

“We are fighting to make rare disease a rare occurrence, and that is a goal worth fighting for,” said Paul Schindler. “7,000 rare diseases are known to exist with fewer than 250 cures.  RG fills the gap: we have helped hundreds of families affected by rare diseases, bringing them hope through genomic sequencing and expert scientific analysis.  Additionally, RG provides innovative crowdfunding assistance to address the sequencing procedures and treatment costs.”

Paul Schindler is an established non-profit leader with over 10 years in community development and over 18 years as an entrepreneur.   He was previously the Founder and President of a local Maryland community organization that helped families dealing with sanctity of life issues, human trafficking and child hunger.  Earlier in his career, Schindler worked at McGraw-Hill as a client analyst while developing his own company that eventually started offering consulting services to two leading financial institutions – Capital One Bank and PNC Bank.  An experienced leader and non-profit organizational development leader, Paul Schindler brings a strong operational background and a vision to see Rare Genomics Institute reach its next phase of continued growth.

“I am humbled and excited to be working alongside such amazing professionals and experts that all are focused on helping people that are often left behind,” noted Paul Schindler.  “I am delighted to join RG as it continues to grow. I see greater expansion and leveraging of our solutions to assist not only individual patients, but the entire rare disease community.”

About the Rare Genomics Institute

RG is a non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, such as Harvard, Yale, Johns Hopkins, and Stanford, RG helps custom-design personalized research projects for diseases so rare that no organization exists to help. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable community funding to support any type of research that leads to rare disease therapeutics.

For more information about Rare Genomics Institute, visit