Support Groups for conditions & syndromes affecting the baby
Contact-a-Family
ARC - Antenatal Results & Choices
ASBAH - Association for Spina Bifida and Hydrocephalus
BLISS - the Premature Baby Charity
British Heart Foundation - BHF
Children's Heart Federation
CLAPA- Cleft Lip and Palate Association
Down's Heart Group
Down's Syndrome Association
ECHO- Evelina Children's Heart Organisation
Genetic Interest Group (GIG)
Healthtalkonline -Congenital Heart Disease
Klinefelter Organisation
Little Hearts Matter (previously Left Heart Matters)
Mencap
National Portage Association
Perinatal hospice
Sense
Sickle Cell Society
SOFT -Trisomies Support Group
SWAN -Syndromes without a name
Terence Higgins Trust
The Cystic Fibrosis Trust
The UK Thalassaemia Society
TssS - Turner Syndrome Support Society
UK-Cherubs
UNIQUE - Rare Chromosome Disorder Support Group
Bereavement Support
SANDS -Stillbirth and Neonatal Death Society
Child Bereavement Trust
The Compassionate Friends
If I should die
Words of Sympathy
Hospital Chaplaincy Gateway
Support Groups for conditions & syndromes affecting the baby
Contact-a-Family
www.cafamily.org.uk
info@cafamily.org.uk
Tel: 0808 808 3555 10am-4pm Mon-Friday
A UK charity which provides support and advice to parents of children with a disability or special need. Can put families in touch with each other.
ARC - Antenatal Results & Choices
www.arc-uk.org
info@arc-uk.org
Tel: 0207 631 0285 Monday to Friday from 10am to 5.30pm
ARC offers information and support to parents who are: making decisions during the antenatal testing process, told that their unborn baby has an abnormality, having to make difficult decisions about continuing the pregnancy, having to make difficult decisions about ending the pregnancy.
ASBAH - Association for Spina Bifida and Hydrocephalus
www.asbah.org
info@asbah.org
Tel: 0845 4507755
Works with people with spina bifida and/or hydrocephalus (SB/H), their families and carers to promote individual choice, control and quality of life. The site has a number of information sheets, lists of local associations, links to other organisations and the Link magazine.
BLISS - the Premature Baby Charity
www.bliss.org.uk
information@bliss.org.uk
Tel: 0500 618140 Monday to Friday 10am-5pm
Bliss is a support group for parents who have a baby requiring special care. It also campaigns for improvements in neonatal care and promotes new developments and innovations in care.
British Heart Foundation - BHF
www.bhf.org.uk
internet@bhf.org.uk
Tel: 0300 330 3311 Mon-Fri 9am-5pm
Is the leading national charity fighting heart and circulatory disease. The BHF funds research, education, life-saving equipment and helps heart patients return to a full and active way of life. Its heart conditions section has specific information on children with heart conditions.
Children's Heart Federation
www.childrens-heart-fed.org.uk
chf@dircon.co.uk
Tel: 0808 808 5000 9.30am - 4.30pm Monday-Friday
Provides a range of information about all aspects of bringing up heart children. Runs a national helpline for both families and professionals involved with heart children. Can put parents in touch with appropriate federated groups around the UK.
CLAPA- Cleft Lip and Palate Association
www.clapa.com
info@clapa.com
Tel: 020 7833 4883
CLAPA aims to organise local parent-to-parent support through its nation-wide network of branches. It runs a specialist service for parents and health professionals seeking help feeding babies with clefts. Offers support for children and adolescents affected by clefts, encourages research, public awareness and education. It also supports projects in countries where cleft treatment is limited or unavailable.
Down's Heart Group
www.dhg.org.uk
info@dhg.org.uk
Tel: 0844 288 4800
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 useful websites and sources of information.
Down's Syndrome Association
www.downs-syndrome.org.uk
info@downs-syndrome.org.uk
Tel: 0845 230 0372
The organisation focuses solely on all aspects of living successfully with Down's syndrome. The site has information, a section for new parents and a magazine, Down 2 Earth, which is produced by people with Down's syndrome for people with Down's syndrome.
ECHO- Evelina Children's Heart Organisation
www.echo-evelina.org.uk
Is a support group for the families of children born with heart conditions. It is a voluntary organisation and a registered charity. ECHO is run by parents of heart-children who all appreciate the benefits that can be gained through contact with other parents in a similar situation. The site also has a message board and newsletter.
Genetic Interest Group (GIG)
www.gig.org.uk
mail@gig.org.uk
Tel: 020 7704 3141
Is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
Healthtalkonline -Congenital Heart Disease
www.healthtalkonline.org/heart_disease/Congenital_Heart_Disease
info@healthtalkonline.org
The site contains video, audio and written clips from interviews with parents of children with congenital heart disease. As well as Information and other resources.
Klinefelter Organisation
www.klinefelter.org.uk
Provides general information about Klinefelter's Syndrome, medical links and contact for support and other interesting information about the condition.
Little Hearts Matter (previously Left Heart Matters)
www.lhm.org.uk
info@lhm.org.uk
Tel: 0121 455 8982
A charity based in Birmingham which offers support and information to families of children with hypoplastic left heart syndrome. Their web site provides details of parents around the world with hypoplastic left heart syndrome children.
Mencap
www.mencap.org.uk
help@mencap.org.uk
Tel: 0808 808 1111
Mencap is the UK's (for Scotland see Enable) leading learning disability charity working with people with a learning disability and their families and carers. Further contact details for Wales and Northern Ireland are available on the site.
National Portage Association
www.portage.org.uk
info@portage.org.uk
Portage is a home-visiting educational service for pre-school children with additional support needs. They aim to support the development of young children's play, communication and relationships and to encourage full participation in day to day life within the family and beyond the home. Portage services are committed to securing inclusion in the wider community for all children and families in their own right.
Perinatal hospice
http://perinatalhospice.org
info@perinatalhospice.org
An American site that offers support for parents who are considering continuing a pregnancy after a prenatal diagnosis that indicates that the baby is likely to die before or after birth.
Sense
www.sense.org.uk
enquiries@sense.org.uk
Tel: 0845 127 0060
Offers a wide range of support and services across the UK to help sensory impaired people of all ages to reach their full potential despite the many challenges facing them. They have regional advice centres a number of publications and local support groups.
Sickle Cell Society
www.sicklecellsociety.org
info@sicklecellsociety.org
Tel: 020 8961 7795
The site has sections on information, research, education and a forum.
SOFT -Trisomies Support Group
www.soft.org.uk
enquiries@soft.org.uk
Tel: 0121 351 3122
Provides support for families affected by Patau's syndrome (trisomy 13), Edwards' Syndrome (trisomy 18), partial trisomy, mosaicism, rings, translocation, deletion and related disorders.
SWAN -Syndromes without a name
www.undiagnosed.org.uk
info@undiagnosed.org.uk
Aims to preserve and protect the health and promote the welfare of children who suffer from undiagnosed conditions.
Terence Higgins Trust
www.tht.org.uk
Tel: 0845 1221 200
Provides support for people and families living with HIV and AIDS.
The Cystic Fibrosis Trust
www.cftrust.org.uk
AskTheExpert@cftrust.org.uk - for medical enquiries
Tel: 0300 373 1000
The Trust is working to improve the lives of people with CF, raise the profile of CF and fund research into a cure. The site has information on the condition and how to live with it, leaflets, booklets, factsheets and links to other organisations.
The UK Thalassaemia Society
www.ukts.org
office@ukts.org
Tel: 020 8882 0011
The society aims to promote and co-ordinate research, educate people on the problems of Thalassaemia and to offer counselling to sufferers and carriers. To bring together patients, families and well-wishers to exchange ideas and information.
TssS - Turner Syndrome Support Society
www.tss.org.uk
Turner.Syndrome@tss.org.uk
Tel: 0845 2307520
Aims to offer support & information to girls & adult women with Turner syndrome, their families and friends. The site has information on Turner syndrome, local support groups, other organisations and a newsletter.
UK-Cherubs
www.uk-cherubs.org.uk
Tel: 0800 731 6991
The group consists of family, friends and medical professionals throughout the UK that have been affected by Congenital Diaphragmatic Hernia (CDH).
Unique - Rare Chromosome Disorder Support Group
www.rarechromo.org
Unique -the rare chromosome disorder support group exists to inform and support families and parents about other rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome or aneuploidy.
Bereavement Support
SANDS -Stillbirth and Neonatal Death Society
www.gloucestershiresands.org.uk
support@uk-sands.org
Tel: 020 7436 5881 9.30am - 5.30pm, Monday – Friday, Tuesday and Thursday 6 - 10pm.
Support for parents and families whose baby is stillborn or dies soon after birth.
Child Bereavement Trust
www.childbereavement.org.uk
enquiries@childbereavement.org.uk
Tel: 01494 568900
A UK charity which provides support, information and resources for bereaved families.
The Compassionate Friends
www.tcf.org.uk
info@tcf.org.uk
Tel: 0845 1 23 23 04 10am - 4pm / 7pm - 10pm
A national self-help group of bereaved parents offering support and friendship to those similarly bereaved. The Helpline is always answered by a bereaved parent who is there to listen when you need someone to talk to. They can also put you in touch with your nearest Local Contact and provide you with information about services. The Helpline also offers support and information to those supporting bereaved families.
If I should die
www.ifishoulddie.co.uk
A resource giving practical guidance about arranging funerals, burials etc.
Words of Sympathy
www.words-of-sympathy.com
Poems and readings for funerals
Hospital Chaplaincy Gateway
www.hospitalchaplain.com
contactus@hospitalchaplain.com
A website with links to every hospital chaplaincy in the UK and abroad. Shows the range of different services available for all kinds of funerals and has a special section about funerals/services for children and babies. Has examples of secular ceremonies, naming services as well as prayers and blessings for the birth of a child who has died.
