October 4, 2018 | Carly Cheung, scientist at the Chan Zuckerberg Biohub in San Francisco, shows Sandra Chipuka and Ernestine Dada Johnson, TechWomen’s Emerging Leaders, tools used in the BSL-1 lab. | Photograph by CZI
We are delighted to announce that Mission: Cure has been selected as one of 20 patient-led organizations to join the Rare As One Network. The Network will provide much-needed support by offering new tools, funding, and capacity-building support and training that will further Mission: Cure’s work providing resources to patients and family members, building a better care model, and finding a cure for pancreatitis.
Chronic pancreatitis is one of more than 7,000 rare diseases and it affects over 100,000 people in the US alone–and up to a million globally. With support from the Rare As One Network, Mission: Cure is one step closer to finding a cure for this disease and finally ending the suffering of hundreds of thousands of people worldwide.
As part of the Rare As One Network, Mission: Cure plans to create a patient-led research network that will prioritize translational research and use data on patient experience and outcomes, including from patients often underrepresented in rare disease. The network will prioritize efforts most likely to improve patient outcomes efficiently, such as drug repurposing.
“For biomedical research in rare diseases to advance quickly and effectively, patients must be full partners with scientists and clinicians in research,” said CZI Head of Science Cori Bargmann. “We’re proud to expand our cohort of Rare As One grantees and further support the rare disease ecosystem as we work towards diagnosis, treatments, and cures together.”
Mariel Priven is a rising junior at Tufts University majoring in Community Health and pursuing minors in Economics and Latin American Studies. Mariel is passionate about health equity, journalism, and learning languages. She joined Mission: Cure to contribute to its goals of developing effective patient-centered care and improving the lives of those with pancreatitis.
Emmanuel Oshodi is a student at the University of Rochester, where he majors in Microbiology and minors in Psychology. Currently residing in New York, Emmanuel joined Mission: Cure as an intern to help bring more attention to chronic pancreatitis through research. He is passionate about equality in patient care and clinical trials as he strives to ensure all patients receive appropriate care regardless of their background.
Julia Anne Chan is a rising second-year graduate student at UC Berkeley’s School of Public Health. Her concentration is in Health Policy and Management. She obtained her undergraduate degree from UCLA with a B.A. in English Literature. She was working at The Arthur Ashe Student Health and Wellness Center at UCLA for a little over 7 years before switching gears to pursue her graduate degree. Her background includes project management, insurance and healthcare administration. She is passionate about health equity, affordability and patient-centered care models. Julia is eager and excited to work with Mission: Cure this summer and looks forward to what this experience may bring.
Alexander Kim is a rising senior Communications and Media major at the University of Michigan. Alex is particularly interested in utilizing the photographic medium with graphic design in bettering communication and information translation between organizations and mass audiences in the hope of more ethical and inclusive advertising. When not at work, Alex enjoys going to jazz clubs and playing the acoustic guitar.
Nathalie Rataj has been a communications intern at Mission: Cure since spring 2021, and will continue working alongside the Communications Coordinator during the summer. She holds a Bachelor of Cultural and Social Anthropology from the University of Vienna and is currently pursuing a Master in International Relations at Central European University in Vienna, Austria.
Leo Caronchi is a current 10th grader at Naples High School and will be moving up to 11th grade next year. He is interested in computer science and engineering. Leo joined Mission Cure because he wants to learn more about pancreatitis and prepare himself for the future.
