2019 Million Dollar Bike Ride Grant

December 12th, 2019

NEHI Research Foundation is pleased to announce that Dr. Lisa Young of Children's Hospital of Philadelphia was selected by the Penn Orphan Disease Center as the recipient of a $60,989 medical research grant. This one‐year grant was made possible by NEHI Research Foundation's participation in the 2019 Million Dollar Bike Ride. NEHI patients and families raised funds totaling $30,000 which were matched by the Penn Orphan Disease Center.

Stay tuned for our participation in the 2020 MDBR and the grant that will follow!

2019 NORD Grant

April 30th, 2019

NEHI Research Foundation and the National Organization for Rare Disorders (NORD) have teamed up to issue a $30,000 grant for medical research related to NEHI. All funding was supplied by NEHI Research Foundation and the NORD Research Grant program will be facilitating the RFP and grant issuing process. NORD will review all proposals and use the NORD Scientific and Medical Advisory Committee to select the most deserving proposal. Proposals were due June 18th, 2019 and we are anxiously awaiting to see what promising research will be supported. We expect the award announcement to take place in February 2020.

Dr. Young's Genetic Research

December 11th, 2018

NEHI Research Foundation is proud to announce that we are supporting Dr. Lisa Young's genetic research initiative by way of a $20,000 directed gift to Vanderbilt University. 

While research continues at Vanderbilt University, Dr. Young has accepted a new position at Children's Hospital of Philadelphia (CHOP) and the study has been transferred. New participants will now enroll through CHOP. If you already submitted samples for the study you may be contacted by the team at CHOP to obtain authorization for them to be transferred. If you have not yet signed up for this study please do so by submitting your information below and using the link at the bottom of the page to view study details.

Let us know you are interested

Fill out the form below so we can answer any questions you may have and keep you updated on research progress!

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©2018 by NEHI Research Foundation.