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:
Written by Lori Lawter, MPH We’ve heard a lot about bringing drugs to market lately, especially in light of the COVID-19 vaccine. You might wonder,
Rare disease therapies are often difficult to access, whether that is due to price, a patient’s location, or another factor. Because of these obstacles, many
Dr. Ryan Gray, in support of primary care doctors who see as many as thirty patients a day, or specialists in general, offers some helpful
Patient Worthy makes a point to develop relationships with advocacy groups focused on rare diseases in order to help spread awareness, highlight patient experiences, and
Clinical trials face many obstacles regardless of which disease they aim to investigate. However, rare disease trials face additional problems that don’t typically impact studies
“Rare” is a documentary that gives its viewers a glimpse into the world of rare diseases, something that many people know little about. Until now,
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