MongoliaThe Chapter’s Twinning Committee has spent a great deal of time and effort towards researching and applying for a Twinning partnership through the World Federation of Hemophilia (WFH). In August of 2013, the committee sent in an application to the WFH that described what the Chapter would have to offer a potential twin in terms of helping them develop their own patient organization. The members of the CHS-MC Twinning Committee are Milena Pirnat, Chair, Paulette Cote, Nick Czehryn and Peter Czehryn.

A committee at WFH reviewed the Chapter’s application and matched us with a potential twin, Mongolia. As Milena, Chair of the CHS-MC Twinning Committee, was attending the World Congress of Hemophilia in May this year, she was able to meet with WFH staff involved in Twinning and with delegates from Mongolia!

The next step in the Twinning process is to have an assessment visit with the potential Twin. The goal of the visit is to research the needs of the Twin to be able to develop a project plan. The project plan is then submitted to the WFH, for their final approval. Milena and Paulette are preparing to leave for the assessment visit at the end of July, 2014!  They will be accompanied by Robert Leung, who is the WFH head of the Asian Sector.

Here is an article about Twinning written by Milena about twinning for the Chapter newsletter in 2013:

Twinning Program (WFH)

CHS-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.  Sponsorship and annual grants for Twinning Program is provided by Pfizer.

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. CHS-MC organized a Twinning Committee that will send an application to WFH and wait for approved matching in October (where they announce suitable Twins). When the time comes we may need more volunteers. If you are interested in participating don’t hesitate to contact our office.