Abdelfatah Ibrahim, MS International Federation’s Regional Capacity Building Manager, recently visited China with consultant Daniel Alberman. This is his report.
Despite a lack of sleep after my long flight and the onset of jetlag, Sunday proved to be a great start to our visit. I had the chance to deliver training on project design and organisational capacity assessment to a number of rare disease organisations working in China.
The day gave me a real insight into the lack of awareness of rare diseases in China, often causing those affected to be stigmatised and isolated. One rare disease organisation had their neighbours leave for fear of contact with the people who visited their office.
The rest of my visit focused on supporting MSZJ (MS Home), a new MS/NMO group. Through a series of training sessions, I worked with key volunteers to develop their vision, mission and objectives. This was a good chance for me to better understand MSZJ and the challenges faced by people with MS/NMO in China.
MSZJ was founded and is now run by two young enthusatic people; one has MS and the other has NMO. ‘Emerging and keen to learn’ are the best words I can use to describe them, keen to learn new skills that can help develop their organisation and, in turn, benefit people with MS/NMO in China.
The visit ended as positively as it began, with MSZJ having developed an organisational plan. In the months to come, I hope that MSZJ will use this plan to develop their projects and, in parallel, continue to invest in improving their organisational capacity. MS International Federation will be returning to China in 2015 to continue to support MSZJ in their work.
By reducing pressure and eliminating barriers we will enable each individual affected by MS/NMO in China to lead a better life.
Strengthening the operational capacity of the organisation, to provide each individual affected by MS/NMO in China with information, rehabilitation and psychological support, and promoting access to treatment and increasing public awareness.