Sustainable development for rare disease charities workshop

Our second workshop of 2016 introduced how patient groups can sustainably grow their charities.

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.

Uday Thakkar - Red Ochre

Uday Thakkar, from Red Ochre, opened the afternoon with a presentation on developing a business plan. As Uday explained, business plans inspire confidence and excitement in the reader, motivating them to support the charity. They outline the vision and mission of the organisation, and set out their strategic plans for the following years. He outlined the several stages charities need to undertake to clarify their plans, and then delved into what to include in the business plan itself.

 

Uday Thakkar - Red Ochre

Uday returned to give a presentation on managing finances. While financial reporting is one of the most important management tools, most charities do not understand their finances and do not use the tool appropriately. Uday shared different approaches for creating budgets and monitoring finances for those without financial training. One of his key pieces of advice for small organisations was to approach accounting colleges for pro bono support. They will often provide support from students, who are able to help charities create a simple and practical set of accounting tools.

Dan Lewi - CATS Foundation and Nystagmus Network

After a networking break Dan Lewi, from the CATS Foundation and Nystagmus Network, presented on the different benefits and challenges associated with smaller and larger trustee boards. Based on his personal experiences at the two aforementioned charities, Dan explained that while smaller boards have clear leadership and can be very reactive, they may not have the capacity to fully support their community and their decisions may not necessarily undergo the most robust discussion. On the other side, larger boards can have an increased capacity to act and have clear processes for rigorous decision making, but it can be challenging to get consensus and decisions may take a long time.

Oliver Timmis - AKU Society

Our final presenter was Oliver Timmis from the AKU Society, who shared practical tips for recruiting staff. Given the usual 9-to-5 work day, it is possible one ends up spending more time with colleagues than with family. As a result, it is vital to hire good staff. Oliver walked through the different steps of recruitment: from getting the job description right, through to where to advertise, how to interview, and finally how to develop your team.

We would like to thank all the speakers for their informative presentations, White & Case for the wonderful venue and catering, and all of our delegates for participating!