I've seen a few mentions on comments that people were unaware that there are any national charities for Fibro in the UK, so here's an introduction to FibroAction!
FibroAction is a registered national charity (charity number 1125957) working in the UK.
FibroAction's aims are:
1. to educate people about Fibro, including people with Fibro, their friends, family & carers, healthcare professionals and the general public
2. to support people living with Fibro
FibroAction is a completely volunteer-run organisation. We have a board of trustees/directors along with some other core team members who are on our Council of Members, and then further volunteers helping us in a variety of ways. We're scattered around and all work from home.
From the start, we wanted to make sure that FibroAction could be accountable and transparent in the way we work, and membership of the Council of Members is open to individuals, local groups or other organisations who have either made a significant contribution to FibroAction's aims or who, through virtue of their skills, experience and enthusiasm, are likely to make a significant contribution to FibroAction's aims in the future. Council members have the right to vote at General Meetings of FibroAction.
I helped found FibroAction in 2008 because we felt that there needed to be better information available on Fibro. A core aim of FibroAction has always been to make reputable, up-to-date and evidence-based information on Fibro more easily accessible.
One the ways we've done this is to work with other organisations to help them update their information on Fibro. We have done this with NHS Choices (formerly the NHS Direct website in England) since 2008 - see their info on Fibro here: nhs.uk/conditions/fibromyal...
The FibroAction website includes:
~ information on Fibro:
~ a Support Group Directory:
~ Benefits Information:
~ a Calendar of Events:
We also give talks to local support groups, educate healthcare professionals, give small research grants (something we're hoping to expand in the future), answer queries (from people with Fibro, healthcare professionals and media) and send out flyers and posters to support groups, professionals and clinics.