National and International Information
- RareRenal.org – Vasculitis Rare Disease Group –www.rarerenal.org/rare-disease-groups/vasculitis-rdg/
- Trinity Health Kidney Centre – (Trinity College Dublin) – www.medicine.tcd.ie/thkc/research/
- Vasculitis Awareness Ireland – www.vasculitis-ia.org/
- Arthritis Research UK – www.arthritisresearchuk.org/
- Rheumatoid Arthritis Support Network – https://www.rheumatoidarthritis.org
- Cortisone Information – www.cortisone-info.com/
- Disability Rights UK – Help Claiming PIP – www.disabilityrightsuk.org/personal-independence-payment-pip
- Vasculitis Foundation (USA) – www.vasculitisfoundation.org/
- Vasculitis Foundation Canada – www.vasculitis.ca/
- Mayo Clinic USA – (Arizona. Florida. Minnesota) – www.mayoclinic.org/
- Arthritis Care – www.arthritiscare.org.uk/Home
- Lauren Currie Twilight Foundation – www.thelaurencurrietwilightfoundation.org/
Disease-Specific Websites
- Behçet’s Syndrome Society – phone: (helpline): 0845 130 7329 or 0845 130 7328.www.behcets.org.uk
- Churg-Strauss Association – www.cssassociation.org/
- Henoch-Schönlein Purpura: “Contact a family” – phone: 0118 941 6391 or by e-mail.
- Kawasaki Disease Support Group – phone: 02476 612178 Best time to telephone: 9am – 10pm, Monday-Sunday. www.kssg.org.uk
- Microscopic Polyangiitis message boards – www.facebook.com/pages/Microscopic-Polyangiitis-MPA-Support
- PMRGCAuk – Polymyalgia Rheumatica and Giant Cell Arteritis – phone 0300 111 5090 or 0300 999 5090. www.pmrgcauk.com. email: PMRGCAuk Enquiries
- PMR-GCA Scotland – phone: 0300 777 5090 www.pmrgcascotland.com
- Relapsing Polychondritis Support Group – 21 Staneway, Leam Lane, Gateshead, Tyne & Wear, NE10 8LR
Vasculitis UK Web Discussion Groups
- Vasculitis-UK HealthUnlocked – A discussion group for people with vasculitis and for people with an interest in vasculitis. You can set your own levels of privacy for who sees your posts. Health Unlocked
- Facebook (Vasculitis UK): – Become a member of Facebook – Vasculitis UK. This is a closed group where only members can see your post.
- Facebook (Vasculitis UK Young Vasculitis): – A closed group for young vasculitis patients between the ages of 16 and 30ish to chat to others in a safe environment. Facebook – Young Vasculitis
- Facebook (Vasculitis UK Bereavement Support): – A closed and safe group for bereaved family and friends to chat to others who have been bereaved because of vasculitis. Facebook – Bereavement Support
- Facebook (Vasculitis UK Caring for Carers): – A closed and safe group for those who are caring for a vasculitis patient. Chat and find help and support from others who care for a patient. Facebook – Caring for Carers
- Facebook (Vasculitis UK Music for relaxation and meditation): – For music to help with relaxation, meditation or just to sit and close your eyes and rest for a while join. FAcebook – Relaxing and Meditation Music
- Facebook (Vasculitis UK Timeline): – An open group with up-to-date information, news, photographs and much more. Facebook – Timeline
Discussion Groups – Individual Vasculitis Diseases
Facebook also has a number of Discussion Groups for the individual vasculitides. Go to Facebook and search for the disease.
Live Chat Room for CSS (EPGA)
To join please visit: Churgy Chums