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Please note: HeartLine is not responsible for the content of any of the following internet sites. They are included at the suggestion of other members and in no way necessarily represent the views of HeartLine Association.
- Foreign language versions of Heart Children handbook
- The Heart Children Handbook is an acknowledged guide for parents who need to understand their child’s heart disorder. The handbook covers a comprehensive range of topics. This includes education, and social service provision in the UK. It is written and illustrated to make this complex subject a little less daunting. The handbook was first published in 1989 and updated in 2002. It has helped to inform thousands of parents in the UK and overseas. However, it was only available in English. We had been asked by clinicians if we would consider a translation project. To evaluate the need for such an undertaking, we sent a questionnaire to 17 children’s cardiac centres. The information they provided enabled us to formulate a list of priority languages: Arabic, Hindi, Urdu, Bengali, Gujarati, Punjabi, Somali, Cantonese, Italian, Spanish, Portuguese, Turkish and Albanian. We have now published Heart Children in 7 of the languages: Arabic, Hindi, Urdu, Gujarati, Punjabi, Bengali and Italian on the internet at our dedicated website. The translations are a valuable asset to cardiologists and cardiac nurses and also to general practitioners and community nurses who are responsible for communicating this complex subject to parents from minority groups. This is of tremendous benefit to parents who do not speak English and to parents who speak English as a second language.
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- Congenital Heart Disease (CHD) webring
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HeartLine is a member of the Congenital Heart Disease (CHD) webring, an international internet site
maintained in the USA. You may find some of the CHD webring pages distressing, especially those written by families who have lost heart children.
- Loyola University Pediatric
CV Surgery Dept. (USA)
- Has a good website which includes Kidzone,
a place for kids with heart disease. Other interesting pages
are 'Parent's Place' and 'Practitioner's Area'.
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- Contact a Family (UK)
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website is for families who care for children with any disability or special need.
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- The Congenital Heart Defect Support Group (Canada)
- for cardiac kids
contains PDHeart member introductions. These are stories of the members' heart children.
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- HealthLinkUSA (USA)
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provides links to 1000's of health sites. Designed to be easy to use for people searching the internet for information on a wide range of specific health topics, including Congenital Heart
Diseases. Links to sites which discuss treatment, prevention, support groups, e-mail lists, message boards, risk factors, statistics, research and more are included.
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- The Down's
Heart Group (UK)
- A UK charity which offers support and information to families who have a member with Down's Syndrome and congenital heart defects. On this site you will find information about heart defects, tests and procedures, and other topics of interest, as well as details of the support and information available from the Down's Heart Group. Everyone involved with the group is themselves a parent (if not natural, then foster or adoptive), or in a few cases a grandparent. We have all found it helpful to be in contact with other families, perhaps it would help you too.
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- Foundation For People With Learning Disabilities
- Our website has been designed to provide information about:-
* issues which affect the lives of people with learning disabilities;
* the work of the Foundation for People with Learning Disabilities
It has also been designed to act as a gateway to some of the other resources on learning disabilities, both here in the United Kingdom and overseas. Our website is the largest site on learning disability issues in the United Kingdom
- La Leche League (UK)
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is for those mothers who are breast-feeding, or thinking of breast-feeding,
offering help, information and mother-to-mother support. La Leche
League, founded in 1956, is an international organisation and
the world's largest source of breast feeding related information.
It became established in Britain in 1971 and since that time
has grown rapidly to over 160 leaders and 90 groups.
Each La Leche League Leader is a mother who has happily breast
fed and who enjoys helping other mothers to do so. Through her
training with LLL, her contact with many breast feeding mothers
as well as her own experiences, a La Leche League Leader is usually
able to offer practical suggestions to help a mother cope with
any problems that may occur. Leaders are volunteers who are available
at any time to speak with a mother on the telephone.
For support and details of a Leader with specific experience
relating to breast feeding heart babies: 020 7242 1278.
La Leche League can help if:
- You are breast feeding well but would like to know more
- You have questions or need help
- You have recently weaned your baby sooner than you had wished
to
- You were unsure at first but would now like to breast feed
- You are pregnant and know that your baby has a heart defect
- You would like to make friends with other accepting mothers
of breast fed babies
- The Cardiomyopathy
Association (UK)
- site provides information on all four main forms of this heart muscle disease. We are a UK charity providing info for sufferers and families affected by cardiomyopathy - a heart muscle disease which affects over 150,000 in the UK. Content is in layman's terms for easy understanding. Visitors can also download glossaries and data from the site.
The Association also has a freephone helpline 0800 0181 024 for UK callers.
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- Children's
Heart Federation (UK)
- Help and advice for friends, families and professionals concerned with children with heart disorders.
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- Surrey Young Carers Project (UK)
- is an independent project that aims to support
young carers within Surrey. We realise that caring responsibilities
may inhibit a young carer from going out and joining clubs and
activities. There may be difficulties in attending school and
health issues such as lifting someone. We aim to provide young
carers with the opportunity to meet other children in similar
circumstances, build their self-esteem and develop their social
networks. We also aim to raise awareness of the needs of young
carers with professionals such as teachers.
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- CHD email community (UK)
- CHD-UK has been set-up in order to bring families, friends and sufferers together. Subscribers receive emails from other group members in which they discuss medical matters, concerns and ask questions of one another. If people need help getting onto the list, they can email Dan at dan.j.english@blueyonder.co.uk.
Please note that this email group is completely independent of HeartLine Association and that the opinions expressed by group members do not necessarily represent the policies or views held by the Association.
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- Warm in Water products
- Important to people who really need the physical benefits of swimming (and for children at least, the social benefits are huge) but just get too cold too quickly.
Children may be able to go to a normal temperature pool for the first time and therefore swim with siblings and friends.
All products are available from birth up to adult.
We offer a service for adjusting, or making garments in special sizes, to fit and only charge any extra at cost (no extra profit margin is added to the product).
We have been working with children with special needs for over 10 years now, we previously had the company Polyotter and designed the first real bouyancy suits on the market. We plan to launch another range of buoyancy wear in March 2003, it is very helpful to children who need that extra confidence and help in the water - as well as a boon to the carer.
We are happy to give 10% discount to HeartLine Association members.
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- Max Appeal
- offers support to families with children with Di George syndrome, VCFS & 22 Q11.2 Deletion.
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- disabledinfo.com
- Recently launched, modified to provide a one-stop site for all disabled people. There will be shopping mall, plus travel and leisure sections later in the year. The Webmaster welcomes all ideas and information.
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- Children's Heart Association
- Formed in the UK in 1973 as the Association for Children with Heart Disorders, CHA is a support group run by families and friends of cardiac children for families with, or who have had, children with heart disorders.
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- UK Self help groups
- FindSupport.co.uk
- For the last two years, FindSupport.co.uk has established itself as a popular resource for finding self-help and support groups in the UK.
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- UKselfhelp.info
- ICD Support Group of North Staffordshire
- Patient and Family Heart Support Group of North Staffordshire
- ICD Helpline 01782-852509. We have been Est: since 1997 our membership is nation wide as more ICDs are now being fitted to help to combat Sudden Cardiac Death in all age groups in the UK.
- Heart and Coeur
- Med411.com
- Content of interest to healthcare professionals.
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- careandhealth.com
- On-line resource for professionals in social care. The site has an effective and popular recruitment area, extensive policy and law references, daily news, features on professional practice, a database of UK approved social work courses, discussion areas and over 1600 links to other sites.
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Heart Transplant Families Together.com
Heart Transplant Families Together (HTFT) is a national voluntary self help group with charitable status made up of parents and carers whose children have had, or whom are awaiting heart or heart lung transplantation.
C-Reactive Protein
CRP Health, a free site that encompasses as much relevant information as possible regarding CRP.
Child Bereavement Trust
The Child Bereavement Trust (CBT) is a national UK charity, founded in 1994 and by listening to bereaved children and parents, CBT leads the way in improving the care offered by professionals to grieving families in the immediate crisis and in the many months following the death of someone important in their lives.
- Los Altos feeding Clinic
- This is a nonprofit pediatric feeding clinic to help ween children off tube feeds.
- Will I Still Be Me? A journey through a transplant
- I am a long survivor of a congenital heart condition, having been born in 1956 with Eisenmenger syndrome, at a time when no treatment was available. I have written a book, 'Will I Still Be Me? A journey through a transplant' about living with a congenital heart condition and heart-lung transplant.
- Cardiac matters
- Focused on cardiac issues; the causes, symptoms and treatments.
- Elizabeth Finn Care
- Elizabeth Finn Care is a charity that provides practical and financial support to people from a wide range of backgrounds - people who have slipped into poverty due to, or made worse by, physical or mental illness, family breakdown, bereavement or redundancy and older people on inadequate pensions. Established over a century ago by social entrepreneur Elizabeth Finn, the charity provides grants and support to over 2,000 people who are struggling to make ends meet and who often feel isolated and neglected - help that we know transforms, and even saves, lives.
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- Webmaster
- Original web design and ongoing website maintenance by Jenny Kent, Amber Light Accounting Ltd. Chartered Management Accountants. Email: info@amberlight.co.uk
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