Strengthening the patient organization in Ethiopia

The Ethiopian Hemophilia Society (EHS) was formed in 2008 by a group of dedicated patients and health professionals. It is registered as a non-governmental organization (NGO) by the Ethiopian Ministry of Justice. In 2013, EHS transitioned from being an Associate national member organization (NMO) of the World Federation of Hemophilia (WFH), to become a full NMO. Over the years, EHS has undertaken many activities to support the care and treatment of patients with bleeding disorders in Ethiopia.

On June 9 to 10, 2017, the WFH provided support to the EHS Board with the development of its first ever Strategic Plan, with a focus on training members on leadership, fundraising, and advocacy skills. The sessions were facilitated by Bradley Rayner, WFH volunteer trainer and President of the South Africa Hemophilia Foundation (SAHF).

The sessions were interactive, with a mix of plenary, group work, and discussions. During the sessions, participants shared their vision and journey with hemophilia. Sister Berehune left her career as an accountant to become a nurse when her son was diagnosed with hemophilia so that she could care for her son and other patients suffering from inherited bleeding disorders. She is currently the nurse in charge at the Hematology clinic at Tikur Ambessa Referral Hospital caring for patients with bleeding disorders.

Beiyou, another participant, discovered her son had hemophilia after his circumcision. She had to undergo great difficulties before she was referred to the EHS. She said, “I am grateful now because the EHS helped me understand this disorder and its management. I am now happy to participate in the World Hemophilia Day celebrations and to see the youth coming together to raise awareness for Hemophilia. My wish is to see the EHS stand strong and have its own building, grow, and reach many.”

Beiyou shared an incident that she went through with her son that made her truly value the work of EHS. Her son experienced internal bleeding, and when she took him to a hospital the doctors concluded he needed to be operated on, thinking it was appendicitis. She opposed the surgical intervention and insisted that her son be given fresh frozen plasma. The doctors reluctantly respected her request, with her son’s health eventually improving. Beiyou said that her son was saved from the operation thanks to the awareness and knowledge she had gained on hemophilia through EHS.

EHS Board Members and Youth representatives present at the training workshop

At the conclusion of the training, a leadership succession plan was proposed. Also, an organizational structure and strategic objectives were agreed upon. The strategic objectives include organization development, treatment and diagnosis, advocacy and awareness, fundraising, and governance. The next step for the EHS board will be to define core activities, key performance indicators, and identify the people who will be responsible for the different components of the plan. The draft Strategic Plan will be presented at a EHS Board meeting for review and approval, followed by the development of an operational plan over the coming months.