Assuring access to transformative therapies for all rare disease communities.
Connecting the dots
Research and funding for orphan diseases is grossly unmet. ODC provides technological and educational resources, identifies funding opportunities, and fosters therapeutic development and innovative research.
GCSX Program Featured in the Journal of Genetic Counseling
We're delighted to share that our paper describing the Genetic Counseling Student Exchange (GCSX) Program has been published in the Journal of Genetic Counseling.
GCSX is an Orphan Disease Center JumpStart program that pairs genetic counseling students with rare disease patient advocacy organizations for a 10-week service-learning experience. Over four years, 72 students have partnered with more than 50 foundations to develop educational materials, research landscape reviews, patient resources, and community needs assessments.
Sincere thanks to our colleagues at the University of Pennsylvania Master of Science in Genetic Counseling Program, and most of all to the rare disease organizations who welcomed our students and shared their work with them.
In the United States, orphan diseases represent a collection of disorders that afflict fewer than 200,000 individuals for any single disease type. There are more than 7,000 distinct orphan diseases.
In the aggregate, over 25 million people in the United States suffer substantial morbidity and mortality from orphan diseases. Despite this huge number, research in most disease types has lagged far behind other major areas due to a combination of technological and funding limitations.
The Orphan Disease Center of the University of Pennsylvania and the Children‘s Hospital of Philadelphia exists to facilitate and fund research, and develop transformative therapies for all rare diseases.
We aim to make rare disease research accessible, collaborative, and sustainable.
Programs & Initiatives
Grant Opportunities
The ODC offers over 50 grant opportunities in 30+ disease areas annually to researchers across the globe, as well as within the Penn and CHOP community. Since 2011, our grant programs have funded $37.6 million in rare disease research.
JumpStart
The JumpStart program serves to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program partners with patient groups and families to address gaps by identifying key opinion leaders and introducing new researchers to a disease.
Million Dollar Bike Ride
The ODC is proud to partner with 30+ disease teams made up of patients, caregivers, foundations and family members who tirelessly raise much-needed funds for research grants.
