(Please note Sandscannot guarantee the accuracy on the information
on these sites)
|
ORGANISATION |
SPECIALISATION |
LINK |
| Action on Pre-Eclampsia
(APEC) |
Aims to ease and prevent
suffering from pre-eclampsia and improve care and understanding
of the condition. |
www.apec.org.uk/
|
| Association for Children
with Heart Disorders
|
Helps hospitals with funding
for vital pieces of equipment and give support and understanding
to parents and families. |
www.heartchild.info/
|
| Anencephaly Support |
The
group aims to provide emotional support to families, to give information
on the condition and provide an opportunity to talk to someone who
has also lost a baby with anecephaly. |
Tel: 01684 573974 |
| ASBAH (Association for Spina
Bifida and Hydrocephalus) |
Has
information and support for parents of children with spina bifida
and/or hydrocephalus. Bereaved can speak to medical advisors. |
http://www.asbah.org/ |
| British Heart Foundation |
Funds research into the
causes, prevention, diagnosis and treatment of heart disease. It
has a wide range of information available. |
www.bhf.org.uk/ |
| British Kidney Patient Association |
Counselling and advice for
patients with kidney problems |
01420 472021/2 |
| British Liver Trust |
Can give medical information
about all forms of liver problems. (see also OC Support) |
www.britishlivertrust.org.uk
|
| British Thyroid Foundation |
Offers support for affected
adults, and support for families of children with thyroid disorders |
www.btf-thyroid.org |
| Children's Liver Disease
Foundation |
Pioneering research, effective
education and giving professional, caring emotional support to families
and young people with a liver disease |
www.childliverdisease.org
|
| CLIMB (Children Living with
Metabolic Disorders) |
Information and support
about metabolic diseases |
www.climb.org.uk
|
| Congenital CMV Association |
Self Help Group offering
contact between families and campaigning for further research. It
publishes a newsletter and has information available. |
01743 850055 (answerphone) |
| Contact a Family |
UK-wide charity providing
support, advice and information for families with disabled children.
Has an online directory of support organisations for many conditions. |
www.cafamily.org.uk/ |
| Diabetes
UK |
Help and support for people
with diabetes. Information for parents. |
www.diabetes.org.uk/
|
| Downs Syndrome Association |
Offers information, advice,
counselling and support for parents of children with Down’s syndrome.
|
www.downs-syndrome.org.uk |
| DPPi (Disability Pregnancy
and Parenthood international) |
Support for parents with
disabilities and long term health problems. |
www.dppi.org.uk/ |
| Genetic Interest Group (GIG) |
National alliance of organisations
with a membership of over 120 charities which support children,
families and individuals affected by genetic disorders / genetic
diseases. |
www.gig.org.uk/ |
| GBSS (Group B Strep Support) |
Offers support and information
by telephone and letter and aims to raise awareness of Group B Streptococcus
infection. Responds to enquiries from the families of affected babies
and women known to carry or have carried the bacteria. |
www.gbss.org.uk |
| Heartline Association |
Offers support and information
on aspects of congenital heart disease in babies and children and
parent contact through a nationwide network of groups. |
www.heartline.org.uk |
| Hughes Syndrome Foundation |
Aims to provide information
about Hughes syndrome (antiphospholipid syndrome: APS) and to help
with research into this condition. |
www.hughes-syndrome.org |
| Lupus UK |
Offers a wide range of information
about Lupus (SLE) and information about Hughes syndrome. |
www.lupusuk.com |
| Meningitis Research Foundation |
Offers information, befriending and support for people affected by meningitis and septicaemia. including support for those who have been bereaved. |
www.meningitis.org |
| Miscarriage Association |
Support and information for those who have suffered the loss of a pregnancy before 24 weeks. |
www.miscarriageassociation.org.uk |
| National Meningitis Trust |
Offers support for people
affected by meningitis/ meningococcal disease |
www.meningitis-trust.org |
| Obstetric Cholestasis Support |
Provides support to mothers
who have the condition and information to those who think they may
have had the condition but need to be diagnosed |
www.ocsupport.org.uk |
| Potter’s Syndrome Support
Group |
Support for parents bereaved
by this syndrome (absence of kidneys); fact sheet. |
Tel: 01938 553755 |
| SENSE |
Fact sheets about complications
caused by rubella in pregnancy. |
www.sense.org.uk/
|
| Sickle Cell Society |
Information, Counselling
and Caring for those with Sickle Cell Disorders and their families |
www.sicklecellsociety.org |
| Soft UK |
Support Organisation For
Trisomy 13/18 and related disorders. Supports families including
those who baby has died. |
www.soft.org.uk/ |
| UK Thalassaemia Society |
Offers advice and support
for affected families together with counselling for carriers, affected
individuals and families. |
www.ukts.org |
| UNIQUE – rare chromosome
Disorder Group |
A source of information,
mutual support and self-help to families of children with any rare
chromosome disorders. |
www.rarechromo.org |
| Vasa Previa Foundation |
Information about Vasa Previa
: symptoms , signs and treatment |
www.vasaprevia.com |
