charities & support groups

Providing information, advice and support to those made chronically ill through the many different forms of allergy and those who care for them. Campaigning for expert diagnosis and treatment to be available to all through the National Health Service.

PO Box 278, Twickenham TW1 4QQ, UK

AAA@actionagainstallergy.freeserve.co.uk

www.actionagainstallergy.co.uk

Our information packs and leaflets cover the whole spectrum of allergy-related illness including food allergy and intolerance, asthma, eczema and hayfever, environmental and chemical allergies, M.E. and IBS. 

Our ‘Find a doctor’ service can give you contact details of the nearest specialist in your area whose practice covers your kind of problem.

Our membership scheme gives you a free 48 pp journal three times a year, an exclusive listing of other members on our AAA Talk-Line who are happy to lend a sympathetic ear, and easy access to our advisory services.

All these can be ordered securely online, by phone or by mail, in return for small donations. 

We depend on public support to keep our charitable services going.

Eczema Outreach (Scotland) is a front-line support charity for people affected by eczema in Scotland. It specialises in helping children with eczema and their families cope better with the condition, and its impact on their family life.

273 High Street, Linlithgow EH49 7EP, Scotland

info@eczemaoutreachscotland.org.uk

www.eczemaoutreachscotland.org.uk

The group started informally in 2010, but is now a well-established entity. Since registering in June 2011, Eczema Outreach Scotland has become the only peer-support network for the most vulnerable children with eczema and their carers in Scotland.

What does Eczema Outreach Scotland do?

• Support families by creating connections between them and giving information
• Increase the confidence and self-esteem of children with eczema through a programme of social outings
• Reduce stigma by raising awareness of the condition
• Influence policy to improve services

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“The ISG is committed to the ongoing provision of an information network and support structure for sufferers and families affected by ichthyosis. Associated with that we need to create a greater awareness and understanding within the medical profession, and lobby for greater research into this distressing condition.” – ISG Vision

PO Box 1404, Bagshot GU22 2LS, UK

isg@ichthyosis.org.uk

www.ichthyosis.org.uk

The Ichthyosis Support Group (ISG) was formed in 1997 by a group of individuals affected by a rare genetic skin condition known as ichthyosis to create a network of parents, sufferers and medics. The group became a registered charity in 2001.

What do we provide?

• Regular newsletters and e-bulletins
• An information pack, full of useful information leaflets about ichthyosis and related subjects
• National and regional events bringing members together
• Regional contacts
• A medical advisory board to offer advice and guidance

Nottingham Support Group for Carers of Children with Eczema (NSGCCE)

To provide support and information for carers of children with eczema

18 Marlborough Rd, Nottingham, NG5 4FG, UK

webmaster@nottinghameczema.org.uk

www.nottinghameczema.org.uk

The Nottingham Support Group for Carers of Children with Eczema (NSGCCE) was started in 1995 by Sandra Lawton. About four years ago our support group finally gave up on our regular bi monthly meetings.  We realised that we were no longer reaching those who needed support.  Carers of children with chronic health problems can be isolated and are often not free to attend a conventional support group.  Our aims of providing support and information for carers of children with eczema had not changed.  We knew there was a need for this support and we decided to use the power of the internet to reach out.

We had already started to develop our website with help from a grant obtained through Self Help Nottingham.  Now:

• There are around thirty patient information leaflets freely available on our website, which are also online streamed audio as well as downloadable documents and mp3 format. 
• NSGCCE has direct links to the senior clinicians and clinical trials teams in Nottingham.
• Though unable to give specific advice, we can get very detailed answers to questions raised on the “Ask the Experts” service.
• We disseminate information via our Blog, Email Alert Service and RSS Newsfeed as well as the website. Our blog also carries real life stories submitted by ordinary people about what they did to control their eczema and documenting their struggles with the disease.
• On our website are links to publications that report on eczema related issues and where possible the site delivers video and audio podcasts made by the team and others if they relate directly to our cause.
• We have a thriving Twitter community hosted at @eczemasupport which currently has nearly 2500 followers, interacts with 100 people a week and makes around 400 tweets during those seven days.
• There are comprehensive links on our website, one for professionals and one for lay people.
• The site is well visited.   (Visits for 118 different nations with an average of 103 visits per day during 2010).

We have found electronic media an effective way to connect with the carers, patients themselves and health care professionals.  It helps us share information both ways.  We are able to share in struggles to cope with the disease and we are also inspired to continue our work.