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:
Kohl’s has brought a new clothing line whose target audience is rare disease patients. The new clothing includes adaptive options to allow easy access to
According to a recent article in Statnews, providers must obtain prior authorization from an insurer for several reasons; to start, the insurer often requires
Note: This press release was republished with permission from the EveryLife Foundation for Rare Diseases. The Rare Disease Legislative Advocates (RDLA), a program of the
Research During COVID Many medical research projects have faced hurdles since the pandemic has started. Regulators have changed development timelines, and many have had to
The Partnership A new partnership has just been announced between Mendelian, a digital health company for rare disease, and Modality NHS partnership, a rare disease
Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease
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