Sanford Health experts spotlight rare diseases at Vatican

VATICAN CITY –- Sanford Health researcher Jill Weimer spoke about rare diseases and advancements in treating them today at an international conference in Rome.

This is the second time Weimer, Ph.D., who is an expert on Batten disease, has presented at the conference, which runs through Saturday. She last went in 2016.

“This event is a great opportunity to network and form connections with other rare disease experts from across the world,” said Weimer, senior director of therapeutic development and associate scientist for Sanford Health.

The conference, “Unite to Cure: “The Fourth International Vatican Conference – How Science, Technology and 21st Century Medicine Will Impact Culture and Society,” brings together leaders in health care, science and research from around the world as part of the Cura Foundation conference, which is held every other year in Rome. This is the second time Sanford Health has presented at the invite-only event. Robin Smith, M.D., president of the foundation, also serves on the Sanford International Board.

Weimer’s panel included Sean P. Nolan, president and chief executive officer of AveXis, and James M. Wilson, M.D., Ph.D., of the University of Pennsylvania. The panel was moderated by Gbola Amusa, M.D., director of research for Chardan Capital Markets.

Researching rare diseases and bringing patients, scientists and physicians together is an integral part of what Sanford Health does, said David Pearce, Ph.D., executive vice president of research and innovation at Sanford, who also is presenting.

“I see these families, and I see how they are searching for answers, and how their lives have been affected,” Pearce said. “We know we can make a difference, and every day we are asking questions and working with different groups to find answers.”

One way the organization tries to connect people is through the Coordination of Rare Disease at Sanford (CoRDS). The free database began in 2010 and now serves nearly 5,000 people representing more than 770 rare diseases.

Recently Kameswaran Surendran, Ph.D., an associate scientist at Sanford Health who is doing research on Alagille Syndrome, was able to meet with a group of people who have or are interested in the disease. Several members of the group traveled to Sioux Falls, South Dakota, to meet with him after moving their information to the database.

“What we are doing today could actually impact someone’s life,” Surendran said. “There is still a long way to go, but every day we are doing something meaningful.”

It’s that spirit of hope and dedication to research that Sanford Health officials hope to impart at the conference in Rome.

The event runs through Saturday. Updates will be posted to Sanford Health News as well as the @SanfordHealth Twitter feed.

To learn more about Unite To Cure: The Fourth International Vatican Conference, please visit: vaticanconference2018.com. Or, you can follow the event on Twitter @CuraFdn and on Facebook at facebook.com/TheCuraFoundation, and join the conversation with #UnitetoCure.

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