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:
These efforts led to collaboration by the International Brain pH Project that involves 131 scientists in 105 labs from seven countries. The scientists have
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we
Perhaps 70- 85% of rare diseases have a root in genetics, – which is why continuous research and reporting is so critical for those with
Neurological conditions now have the highest rates of disability and ill health worldwide. The Disparity Although more than 80% of the neurological deaths and nervous
A study by a team of scientists at the Children’s Research Institute was reported this week in the journal Nature Communications. The study is welcomed
In the world of sports, the spotlight often shines on athletic prowess and competitive spirit. Yet Uplifting Athletes—a Patient Worthy partner—has transformed the narrative on
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