Useful and Interesting Links

Heart Conditions – Detailed information for parents

HeartKids is pleased to offer this new online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with details on health and nutrition, exercise, schooling, adult congenital heart issues. Click link to view: Heart Conditions – Detailed information

General Information

• Better Health Channel

• Australian Genetics Support Australasia
• Cardiomyopathy Association of Australia
• Congenital Heart Disease Resource Page
• Down Syndrome
• Genetics Education Program of NSW

• Heart Support – Australia

• Hypoplastic Left Heart Syndrome
• Kawasaki Disease
• Long QT Syndrome
• Marfan Syndrome

• Marfan NSW

• Velo-Cardio-Facial/Di George Syndrome

• Williams Syndrome

Special Links

• The Royal Children’s Hospital(RCH)

• Contact RCH
  Need to contact the Royal Children’s Hospital?

• RCH Parent information
  Going to the Royal Children’s hospital?
  Find out how to get there, what to bring and what will happen when you arrive;

• Cardiology Department 1
  Looking for information on Heart Defects?

• Cardiology Department 2
  Do you want information about the Cardiology ward for parents?

• Chaplaincy & Pastoral Care
  The RCH Pastoral Care is always there, see;

International Links

• Hospital for Sick Children in Toronto
• Pediheart General Info on C.H.D.
• Anticoagulation Europe
• Association for Children with Heart Disorders
• Association for Children with Heart Disorders, Scotland
• Cardiomyopathy Association
• Childrens Heart Federation
• Heart Line
• Little Hearts Matter
• Marfan Association UK
• Pulmonary Hypertension Association
• ANCC, Association Nationale des cardiaques congénitaux [France]
• Foreningen for Hjertesyke Barn [Norway]
• Jemah [Germany]
• Nederlandse Hartstichting [Netherlands]
• Adult Congenital Heart Association [US]
• Adults with Congenital Heart Conditions [New Zealand]
• Canadian Adult Congenital Heart Disease Network [Canada]
• CHARGE Syndrome Foundation, Inc. [US]
• Childrens Heart Society [Canada/North America]
• Heart Children New Zealand Inc. [New Zealand]

• Noonan Syndrome Support Group [US]

Sad Links

Sadly, sometimes heart children die.

Sometimes families and friend no matter how much they might wish to, can’t be the one you need to turn to. You may not have lost your child but maybe a friend has and you want to help but can’t quite find the place to start. The following are links to sites in both Australia and overseas that have been started to help families, both parents and siblings who have lost a child.

We wish that we did not have to add these links but are very grateful that we are able.

Sids and Kids VIC is an organisation that offers grief/bereavement counselling to families who have experienced the sudden and unexpected death of a child up to six years of age; there are groups also in the Hunter and other states of Australia. This site was suggested by a member who has used it and found them to be helpful.

• Sids and Kids
  www.sidsandkids.org

Sids and Kids Victoria
1277 Malvern Road
Malvern VIC 3144

Ph: (03) 9822 9611
Fax: (03) 9822 2955
Freecall: 1800 240 400

Email

• Compassionate Friends Victoria

The Compassionate Friends Victoria Inc
267 Canterbury Road
Canterbury VIC 3126

Phone: (03) 9888 4944
Fax: (03) 9888 4900
Freecall: 1800 641 091 (Vic & Tas)

Email

The Compassionate Friends was founded in Coventry, England, in 1969, by Rev. Simon Stephens, Assistant to the Chaplain in the Coventry and Warwickshire Hospital. Simon noticed that the intensity and duration of parental grief was much greater than that of others who lost loved ones. He brought together two couples whose children had died at the same time, hoping they might comfort one another. It worked; each parent understood the pain the others were going through, and they were able to support and help one another as no one else could do. In time, the two couples reached out to other grieving parents, and The Compassionate Friends was founded. Compassionate Friends has Australian Offices.

Further telephone contacts are:

Kids Help Line: 1800 55 1800
Lifeline: 131 114

• The Australian Centre for Grief and Bereavement
  www.grief.org.au

Ground Floor
McCulloch House
Monash Medical Centre
246 Clayton Road
Clayton VIC 3168

Tel: (03) 9543 9449 (Monday – Thursday)

Email for counselling

Email for support groups

• Grief/Bereavement Websites:

Journey of Hope Grief Support Network: http://www.johgriefsupport.org

Sids and Kids on-line: http://www.sidsandkids.org

Raindrop – Death education for children of all ages: http://iul.com/raindrop/

Stillborn and Neonatal Death Support (SANDS): http://www.sands.org.au/

Skylight: http://www.skylight.org.nz/

• M.I.S.S. Foundation in the USA was started by Joanne Cacciatore after the death of her daughter. There are lots of different areas on this site and it is the place of the well known kindness project. The site is a little sad, informative, complex and surprisingly very uplifting.