imagesWFHCHS-MC is involved in applying for Twinning Program organized by World Federation of Hemophilia (WFH). WFH is international non profit organization working to introduce, improve and maintain care for people with hemophilia and related bleeding disorders around the world. Hemophilia affects about 400, 000 people worldwide; only 75% receive little or no treatment because of lack of infrastructure, education, treatment unaffordable and hemophilia not a priority with a government. This results in death in childhood, chronic disability and impaired quality of life of many hemophiliacs around the world. Twinning program is one of WFH programs that focus to work together to improve bleeding disorders care around the world. Program began in 1994 (175 Twinning’s supported) and there are currently 34 Twins in 45 countries.

The main goals of a Twinning program includes: short-term partnerships, match developing and developed partners around the world, focus on sustainability and capacity building, two-way collaboration, a way to transfer expertise, experience, skills, resources and information. It also focuses to improve hemophilia care by strengthening emerging hemophilia organizations or treatment centers.There are two type of twinning organized by WHS: Hemophilia Organization (HOT) Twinning that is focused on patient groups and Hemophilia Treatment Centre Twinning that is focused on diagnosis and treatment.

CHS-MC’s goal is to be involved in Hemophilia Organization Twinning program. Our main objective is to be able to transfer some of our knowledge and resources and to able to share and to support our Twin. Possible HOT Activities might include board training, constitutional work, strategic planning, succession planning, chapter building, youth groups, fundraising, patient and family education and lobbying government. There is a cultural exposure and fun involved in this project as well.

The Chapter’s Twinning Committee has been preparing to embark on a Twinning Assessment visit with Mongolia for a few years! Milena Pirnat, Paulette Côté, Peter Czehryn, Nick and Alex Czehryn started with the application to the WFH that described what skills and organizational resources the Chapter might be able to offer a developing patient group. The WFH offered two different possible twins for the committee to consider and in 2014, Mongolia was chosen!

In the spring of 2014, the committee started the work in preparation for an assessment visit in the summer of 2014. This included a PowerPoint presentation about the Chapter and videos of Chapter members to show to the patient group. An unfortunate accident on the flight to Mongolia required Milena and Paulette to return to Canada without making it to Mongolia.

Paulette and Milena are getting ready to try again, this July!

“So excited to be leaving for our twinning assessment visit to Ulaan Baatar on July 17th!!!” – Milena Pirnat and Paulette Cote.

WFH information on an Organization Twinning www.wfh.org/en/twins

Twinning Travel Map

Twinning Travel Map