Social Media & website links: Myositis UK - the... - Myositis UK

Myositis UK

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Social Media & website links

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Jo-GoodeAdministrator
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Myositis UK - the official charity Page on Facebook, administered by Paula Jordan (Trustee) and Jo Goode (Treasurer).

facebook.com/pages/Myositis...

Team Muscle Facebook Page is for anyone fundraising or supporting fundraising for Myositis UK. It is a great way to promote your event, share your Fundraising Page (Just Giving or Virgin Money Giving) , upload photos or updates and for supporters to see your event. Initially set-up for the charities Gold Bond London Marathon runners this Page is now for all fundraisers whatever your activities are. Paula Jordan (Trustee) and Jo Good (Treasurer) administer this Page

facebook.com/MyositisSuppor...

Juvenile Dermatomyositis Facebook Page was initially set-up by Nikki Coleman (JDM mum and Trustee) to raise funds for JDM but has evolved as a great Page for JDM interaction. Now co-administered with Paula Jordan (JDM and Trustee) they Post information that may help JDM parents ranging from news from Myositis UK to re-tweets from other organisations.

facebook.com/pages/Juvenile...

Teddy-Bo his friends, adventures and juvenile dermatomyositis Facebook Page is administered by Paula Jordan and Nikki Coleman. This Page allows anyone to follow Teddy-Bo on his adventures as he meets his friends and raises awareness of the inflammatory muscle disease. A distinct Page from JDM was set-up to allow followers to just follow Teddy-Bo. The Page is for your photos and stories so where-ever you and Teddy-Bo are snap it and Post on the Page.

facebook.com/TeddyBoJDM

Myositis UK Let's Meet Up - The facebook page giving information for informal meetups around the UK for those with Myositis

facebook.com/MyositisUKMeet...

Myositis Forum UK - a facebook group for those in the UK administered by Jo Goode

facebook.com/groups/2432609...

Myositis UK - website

myositis.org.uk/

Twitter - Myositis UK

twitter.com/UKMyositis

Myositis UK - Just Giving fundraising page

justgiving.com/myositis

Myositis UK - Virgin fundraising page

uk.virginmoneygiving.com/ch...

Arthritis UK - Have an Information section on their website with leaflets to download or order these include one on Polymyositis and Dermatomyositis an A-Z of drugs, as well as other conditions like Rheumatoid Arthriris, Lupus, Raynauds etc.

arthritisresearchuk.org/

Myositis Association - An American organisation for all Myositis including Dermatomyositis and Polymyositis. Membership is free. An extensive website includes information and up to date reliable information regarding research and details of diagnostic criteria. Useful community area including live podcasts.

myositis.org/index.php

Cure JM -

The Cure JM Foundation (USA) was established in October 2003 with the goal of raising awareness of this rare disease and funding research to find a cure for Juvenile Myositis.

curejm.org/

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