The Findacure Blog >>> How to sustainably develop your charity
In the rare disease field, patient groups play a crucial role in supporting patients and motivating research into their overlooked conditions. However, research from Global Genes found that half of the thousands of rare diseases do not even have a disease-specific support group to turn to. Where patient groups do exist, they usually come in the form of ‘kitchen-table’ organisations, set up by people living with rare conditions or those who have an affected family member. Run predominantly by volunteers, it can be difficult for these groups to know how to grow and develop as organisations, and the different steps that accompany this process.
To help small patient groups understand this process, we organised a workshop on sustainable development this past Friday, 22nd April. More than 30 delegates joined us from 21 patient groups to explore this topic.
read more at http://www.findacure.org.uk/category/blog/