2019 Million Dollar Bike Ride Grant

August 23rd, 2019

NEHI Research Foundation is pleased to announce that a $60,989 medical research grant has been made available through our partnership with the Orphan Disease Center at the University of Pennsylvania. This program provides a one‐year grant to support research related to a rare disease represented in the 2019 Million Dollar Bike Ride. This Request for Applications (RFA) is open to the international community. All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA.


For more details about this grant program, rare disease focus areas, and how to apply, please visit the ODC website here. The RFA Guidelines can be found here (PDF). Letters of Interest (LOIs) are due no later than Monday, September 23, 2019 by 8pm EST. Please refer to the Orphan Disease Center's website for instructions on LOI submission.  


Please contact Samantha Charleston at, or (215) 573-6822 with any questions.

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.

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.

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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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