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Children's heart federation
www.chfed.org.uk/
www.c
Provide information to families of children with acquired /congenital heart disease, plus much more including links to other heart groups .
Posted January 31, 2012 at 3:13 PM
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Heartline
www.heartline.org.uk/
www.h
For children with heart conditions and their families, online forums where you can chat to other parents and share experiences ,plus much more .
Posted January 31, 2012 at 3:23 PM
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Little Hearts Matter
www.lhm.org.uk/
www.l
Offers support and information to families affected when a child has only half a heart ie HLHS, complex pulmonary artresia etc
Posted March 4, 2012 at 8:24 AM
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British heart foundation
www.bhf.org.uk/
www.b
Great publications on certain congenital heart disease's, Cardiac Liason Nurses plus much more .
Posted January 31, 2012 at 3:32 PM
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Down's heart group
www.dhg.org.uk
www.d
Welcomes anyone with an interest in heart problems associated with down's syndrome.
Posted February 14, 2012 at 2:54 PM
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Cardiomyopathy association
www.cardiomyopathy.org
www.c
The Cardiomyopathy Association helps sufferers and their families best mange the impact of cardiomyopathy
Posted February 14, 2012 at 2:58 PM
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Amelia Matters
www.amelia-matters.org.uk
www.a
Amelia Matters is an organisation that helps to support children who suffer from Congenital Heart Disease (CHD). By educating and raising awareness we hope to help children living with a CHD and their families.
Posted September 9, 2014 at 9:46 AM
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Tiny Tickers
www.tinytickers.org/
www.t
Helping to improve the detection, diagnosis and care of heart babies at birth and soon after.
Posted March 4, 2012 at 8:29 AM
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CHD-UK
www.congenital-heart-defects.co.uk/
www.c
A great website promoting awareness and information on congenital heart disease .
Posted January 31, 2012 at 3:19 PM
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Royal Brompton and Harefield family support group
www.thebromptonfountain.org.uk/
www.t
Posted March 4, 2012 at 8:12 AM
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Childrens heart association
www.heartchild.info/cha/index.php
www.h
Childrens Heart Association is a charity in the north west of England
Posted March 4, 2012 at 8:15 AM
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Evelina childrens heart organization
www.echo-evelina.org.uk/
www.e
To provide help and support to families treated at evelina childrens
Posted March 4, 2012 at 8:20 AM
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Childrens Heart unit fund for families at the Freeman hospital
www.chuf.org.uk/
www.c
For families treated at the Freeman Hospital
Posted March 4, 2012 at 8:18 AM
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Childrens Heart Surgery Fund -Leeds
www.chsf.org.uk/
www.c
Childrens Heart Surgery Fund is the award winning charity supporting the Childrens Heart Surgery Unit and Paediatric Intensive Care Unit at Leeds General Infirmary.
Posted April 16, 2013 at 6:25 AM
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Keep The Beat - Glenfield
www.keepthebeat.co.uk/site/index.php
www.k
KEEPTHEBEAT is an exciting new charity established with an aim to provide hope and support to the families affected by congenital heart defects. The website will have a particular interest in Hypoplastic Left Heart Syndrome, but over time we hope to develop and cover all Congenital Heart Defects.
Posted April 16, 2013 at 6:40 AM
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Heartlink
www.heartlink-glenfield.org.uk/
www.h
Supporting families treated at The Glenfield Hospital Leicester
Posted April 16, 2013 at 6:43 AM
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22crew
www.22crew.org/
www.2
The only parent run family support group for 22q11.2deletion families
Posted July 31, 2012 at 4:00 AM
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Max Appeal
www.maxappeal.org.uk/
www.m
Max Appeal is a UK charity supporting families affected by DiGeorge syndrome.VCFS and 22Q11.2DELETION
Posted February 1, 2012 at 7:49 AM
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Unique-The rare Chromosone Disorder Support Group
www.rarechromo.org/
www.r
Unique - but not alone. The rare chromosone disorders support group.
Posted February 1, 2012 at 7:54 AM
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Barth Syndrome trust
www.barthsyndrome.org.uk/
www.b
Information about Barth Syndrome
Posted March 4, 2012 at 8:09 AM
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Down's Syndrome organisation
www.downs-syndrome.org.uk/
www.d
Providing information and support on all aspects of living with Down's syndrome to all who need it
Posted April 16, 2013 at 6:30 AM
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Swan uk
swanuk.wordpress.com/
swanu
Syndromes without a name ,run by Genetic alliance offering support and information to families of children with undiagnosed genetic conditions
Posted April 21, 2012 at 6:22 PM
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contact a family
www.cafamily.org.uk/
www.c
For families with disabled children
Posted February 8, 2012 at 11:13 AM
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Newlife Foundation for Disabled Children
www.newlifecharity.co.uk
www.n
May be able to offer information and more besides.
Posted February 1, 2012 at 7:41 AM
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Action for sick children
www.actionforsickchildren.org
www.a
May be able to offer you further advice, information and support.
Posted February 1, 2012 at 7:40 AM
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APTCOO
www.aptcoo.co.uk/
www.a
Helps families with special needs children aged 0 - 19 years.
Posted February 15, 2012 at 2:12 AM
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patches heart group on facebook
https://www.facebook.com/patchesheartgroup
https
Information and links.
Posted February 20, 2012 at 4:40 AM
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Family Fund
www.familyfund.org.uk/
www.f
The uk's largest provider of grants to low income families raising disabled and seriously ill children and young people.
Posted February 3, 2012 at 9:23 AM
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www.caudwellchildren.com/
Caudwell Children's vision is a world where all children's needs are met throughout childhood; where disabled children and their families have the right to choice, opportunity, dignity and understanding. We are passionate about improving the health of children and ensuring every family has access to the equipment, services and treatments they require.
Posted September 21, 2012 at 11:02 AM
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Merlins magic wand
www.merlinsmagicwand.org/
www.m
A worldwide charity for children, aiming to provide magical experiences for those who are seriously ill, disabled or disadvantaged . (subject to meeting criteria)
Posted February 3, 2012 at 9:18 AM
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Together for short lives
www.togetherforshortlives.org.uk/
www.t
Posted February 20, 2012 at 7:52 AM
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Make a wish Foundation
www.make-a-wish.org.uk/
www.m
Grant wishes to young people and children fighting life threatening conditions
Posted April 21, 2012 at 6:25 PM
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When you wish upon a star
www.whenyouwishuponastar.org.uk/
www.w
Their aim is to make magical memories for a wish child and their family to remember for a lifetime .
Posted February 3, 2012 at 9:38 AM
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Starlight childrens foundation
www.starlight.org.uk/
www.s
Granting wishes to seriously and terminally ill children and entertaining over half a million children every year in hospitals and hospices throughout the uk.
Posted February 3, 2012 at 9:27 AM
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Rays of Sunshine
https://www.raysofsunshine.org.uk/
https
Rays of Sunshine Children's Charity was formed in 2003 to help children who are living with serious or life-limiting illnesses between the ages of 3-18, across the United Kingdom. It does this by:- 1.Granting these children's wishes however impossible the wish may seem 2.Granting hospital ward wishes 3.Organising events and outings for large groups of seriously ill children such as trip to Legoland and the Sunshine Concert
Posted March 3, 2014 at 5:13 AM
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Dreams come true
dreamscometrue.uk.com/
dream
Wish granting
Posted March 3, 2014 at 5:14 AM
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Homestart uk
www.home-start.org.uk/
www.h
Providing support in your own home
Posted May 14, 2013 at 10:14 AM
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Heart to heart uk
www.cutessentials.co.uk/heart-to-heart-uk-231-c.asp
www.c
This section is for our Heart to Heart (UK) Group Members to purchase Cubbies for their own children with Congenital Heart Defects, or to sponsor other children with the similar conditions or to sponsor an Angel Heart Warrior Cubbie for parents who have tragically lost their baby/child to Congenital Heart Defects (CHD) Heart to Heart (UK) is a Facebook group aimed at sending Heart Warrior Cubbies to children all over the UK using donations or by sponsors purchasing for the children included on our waiting list. If not purchasing for your own child, please ensure you insert the child's parents Facebook name in order that we can contact them for full details and postal address.
Posted June 16, 2016 at 2:31 PM
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