Congenital Hyperinsulinism International (CHI) continues to showcase the amazing work done by hyperinsulinism researchers, healthcare professionals, and drug developers through our Collaborative Research Network (CRN)! Earlier in May, CHI Chief Research Officer Tai Pasquini, PhD, attended the World Orphan Drug Congress in Boston, Massachusetts to highlight the work of the CHI CRN.
The CHI Collaborative Research Network (CRN) is a dynamic international collaboration of researchers, clinicians, and expert patient and caregiver advocates working together to accelerate hyperinsulinism research. You can find more information on our CRN page.
The World Orphan Drug Congress is an important meeting bringing together rare disease advocacy organizations, biotechs, pharmaceutical companies, and other rare disease stakeholders together to discuss the creation of rare disease drugs that often face challenges. Rare disease drugs or “orphan drugs” are those that are used to treat a rare disease. The development of orphan drugs is very difficult as patients are often geographically dispersed, recruitment can be challenging, the study design can be complex, research can take a long time, and small markets often make it difficult for companies to recoup their financial investment. The event offered an incredible opportunity for Tai, as an advocate for hyperinsulinism awareness and research, to network and brainstorm with rare disease drug developers – these connections can be instrumental to getting new ideas for life-saving drugs off the ground.
To showcase CHI’s capabilities and potential role in drug development, Tai presented a poster informing viewers on the work of the CRN and our dedication as an advocacy organization to foster collaborative research (an important aspect of improving care). You can view Tai’s poster to learn about our work with the CRN below:
