We are a small but growing group of Rare Advocates and small Rare Disease Charities. We have limited resources but a great motivation to improve quality of life and wellbeing.
We aim to become a force for improvement in holistic care coordination for our diverse Rare Disease Community.
RCNet currently have members from England, Wales, Scotland, Northern Ireland, Spain, Kenya, and USA; and some members have involved in European Reference Networks. Although we did not expect to have international appeal, we are delighted that the network is expanding in this way.
The skills, knowledge, resources and the individual networks of our members, is going to be great for effective collaborations and awareness raising.
One of our members described us as Small but MIGHTY.We are The Rare Community Network!
Each member is asked to complete a membership form. This will not only act as a record to help us to target our shared, knowledge, skills and resources, but will also help RareQoL governance and to monitor our Equality Diversity and Inclusion activities.
Based on the responses of our RCNet members, we now know that we can use our skills, knowledge and resources to strengthen our member activities. Sharing the work of our RCNet on social media is a simple but very effective way of collectively supporting each member and raising awareness about issues affecting our rare community.
Our members told us what they wanted from our RCNet. We have grouped this into three main themes of
1. Mental Health
2. Equality, Diversity and Inclusion
3. Care Co-ordination
Our RCNet Lead Consultant Elizabeth Davenport has been having 1:1 meetings with our members to gain a more in depth understanding of their needs. We will discuss the needs of or RCNet members at our monthly meetings. Elizabeth will be acting as our ‘match-maker’ to determine if any of our members have similar issues or wish to collaborate.
Joining our RCNet
If you are a Rare Advocate or a small Rare Disease Charity with limited resources we will be delighted to hear from you. Our next meeting is at 2pm on Tuesday 31st August 2021.
This link will take you to our RareQoL contact form. Get in touch with us today.