The Orphan Disease Center’s 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. The program can help facilitate the development of animal models, establish a patient alliance or a patient registry, and organize symposia. Due to limited resources, ODC is unable to provide financial support. JumpStart primarily offers scientific advisement and network outreach.
Here is a list of conditions this partner raises awareness and advocacy for:
Each year, researchers make new strides into genetic research, including the discovery of new genetic disorders. According to Medical XPress, researchers from the University of
Rare disease patients throughout India have expressed their disappointment and anger towards the country’s new policy centered on rare conditions. One of their main concerns
On April 2nd, NFL scouts made their way to Eugene, Oregon to check out some of college football’s most talented players. They watched as athletes
Financial Burdens in Rare Disease In 2019, 20% of all adults in the United States have reported that they had large medical bills that were
In a recent contribution to MSN, Dr. Christopher Austin, director of the NIH Advancing Translational Sciences, compared the medical community’s record-breaking approach to the
Rare disease patients face a number of obstacles when it comes to getting the proper diagnosis and treatment. There’s a lot of work being done
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