Twinning partnership promotes growth and learning

Jocelyn Bessette Gorlin, CPNP, right, teaches a mother about home infusion.

“Life is too short not to help people in need,” declares Jocelyn Bessette Gorlin, a nurse at the University of Minnesota and Children’s Hospitals and Clinics of Minnesota Hemophilia Center. Jocelyn is one of many volunteers involved in the treatment center’s twinning partnership with a treatment center in Armenia.“Rather than being a hand that feeds, it’s much more beneficial to help find a solution. A unique feature of twinning is that you are given the tools to help yourself. This lays a solid foundation for success.”

In 2004, the Minnesota and Armenia treatment centers were partnered through the World Federation of Hemophilia Twinning Program, which matches emerging and established hemophilia organizations and treatment centers to facilitate two-way learning.This is the Minnesota center’s second twinning partnership. They were paired with a treatment center in the republic of Georgia in Eastern Europe from 2000 – 2003.

So far, the latest twinning partnership is proving to be successful. Visits between centers and exchange of informational materials have helped educate healthcare providers and patients in both countries. The Minnesota center has also helped send donated medical supplies and works closely with Armenia’s patient organization.

Volunteers at the Minnesota center have witnessed first-hand the contrast in care received in the US and around the world. “It’s hard to see patients who have less access to treatment than we do in the US,” says Joni Osip, a nurse volunteer. “In Armenia, bleeding disorders are disabling. The difference in quality of life is startling.” Often, visits to Armenia remind Joni of her experiences treating patients with inhibitors in the US almost two decades ago. “With few treatment options, we have to use creative techniques to control bleeding. Sometimes, we arrive with donated factor and patients line up for it because there is no other source.”

Despite this, Margaret Heisel Kurth, who acts as the twin’s main contact in Minnesota, says that twinning is an absolutely positive experience, and encourages other centers to take part. “Treatment centers have access to incredible resources that can be shared easily with other centers to improve care for their patients.” However, she stresses the need for open lines of communication. “To improve care, there must be cooperation and trust between the hemophilia center, patients, and government. The willingness to share information can only help improve the care of bleeding disorders everywhere.”

Jocelyn agrees that “twinning is an educational, life-changing experience.”

Hemophilia Aid 2007 article