Imagine you are affected by a rare genetic condition. How would you feel if there was no patient group to support you?
Condition-specific patient groups often provide a lifeline to patients. They offer a source of information, a supportive community, and the means to influence the development of effective services. For many people being diagnosed with a genetic or rare disease such groups are not available. We want to help those patients and families by building condition specific communities – through our aptly named ‘Building Rare Communities’ project. Through a week by week induction process, we help those involved create and develop a much needed patient group.
We have just finished the first induction process, a 10-week program during which we worked with patients and parents of children affected by eleven rare and genetic conditions and helped them set up their patient groups. These ranged from online communities to charities, from local to national groups.
‘It has been a really well structured course, helping us to think things through to make a sustainable group.’
The induction started with a workshop in early February. This workshop provided an opportunity for some of these patients to meet for the first time and to share their experiences. Parents shared how exciting it was to ‘meet someone who has been through the same things’ as themselves.
‘The Building Rare Communities Workshop itself was really inspiring and motivating. It gave me the skills, knowledge and confidence to initiate a Stargardts Group.’
During the ten following weeks patients were guided through the process of setting up a support group: from defining their identity and goals, building a supporting team, developing a social media strategy, producing patient information, contacting researchers and clinicians and developing a fundraising strategy.
‘I think that the whole scheme and induction process has been invaluable to us. It has encouraged us to get together, take action, focus our thoughts and start to make plans.’
Our participants were also invited to join an online network that proved to be a very supportive community, where patients and parents would look for answers to the daily queries of setting up the group.
‘To any new groups looking to set up, I would recommend this induction to building your rare communities. It is a step by step program that really helps you to think about the details of your end goals.’
Can I take part?
We are ecstatic to hear the impact this induction process has had and because we know there are more patients out there looking to set up their own rare communities, we are running a second induction process.
The new induction process starts on June 19. If you are interested in taking part you can register here.