HeartKids has been working with and supporting families on their childhood-onset heart disease (CoHD) journeys for over 40 years.

As part of the Commonwealth funded work on the National Strategic Action Plan for Childhood-onset Heart Disease (CoHD), HeartKids has developed a national, publicly accessible directory of qualified health care professionals and local and national peer groups to improve access to support, clinicians and other health professionals with specific CoHD skills.

We have collated these professionals and peer groups in our directory across three categories.

Three areas were identified as being of benefit across all communities. 

These categories are: Health Care Professional, Organisations, and Support Networks.

These categories encompass professional, community, and peer-supports to empower and advocate for each unique Childhood-onset Heart Disease (CoHD) journey. 

They may also provide education, healthcare pathways, and emotional advocacy or support for an individual or family.

Each person's journey with CoHD is as unique as the next. One person may need some of the supports listed in the CoHD Directory, where others may not.

All information across categories has been collated through some desktop research and individual submissions. 

If you are a health care professional, work in an organisation, or part of a peer support network with Childhood-onset Heart Disease (CoHD) knowledge, skills, or lived experience, and would like to be a part of the directory please click here to complete a registration form.

If you are a parent/carer, extended family member, or a heart kid yourself, and have a health care provider or organisation you think would benefit others with CoHD, please click here to submit their details for consideration

The listings presently on the CoHD Directory have been included due to desktop research, that aimed to locate individual Health Care Professionals, related Organisations, and Support Networks who/that have direct, or lived experience within the Childhood-onset Heart Disease Community. 

These were included if it was easily identifiable of their professional or working knowledge of CoHD and the community's needs, through websites and published information from internet sources - usually of employment of individual Health Care Professionals.

HeartKids acknowledges that not all relevant listings are yet on this Directory! 

The Directory will be a 'living directory' that is constantly checked, updated, and added to over time, at consistent and frequent intervals.

This Directory will grow, and flourish, with the support of the CoHD community, professionals, and support networks completing registration forms to alert us to those listings that may not be published here yet. The registration form can be found here

For health care professionals, we check the validity of the information provided against their registration board. 

For example, many health care professionals will be registered with AHPRA, or some allied health professionals will be registered with a self-regulating board.

The check of AHPRA or a self-regulating board will occur to confirm only that registration is current, to the conditions that AHPRA or a self-regulating board set for registration. 

This could include listings whereby a health practitioner continues to be registered, however has existing conditions of practice, or have had previous audits in the past. AHPRA, however, does not explicitly state health care professionals' knowledge about Childhood-onset Heart Disease. 

We know that some health care professionals will possess this, if they are, for example, paediatric cardiologists. 

It remains the responsibility for the individual and/or their carer(s) to determine whether the health care professional may provide benefit to them, and they are satisfied by the terms in which they are registered with their relevant professional body, and their knowledge of Childhood-onset Heart Disease (CoHD)

For further details, visit https://www.ahpra.gov.au/, or contact the HeartKids helpline on 1800 432 785 for information regarding registered health professionals.

For organisations, we check the validity of the information provided against publicly listed information, such as business registrations, as well as any additional accreditations or boards that the organisation may be associated with.

We then conduct secondary checks of the organisation online, to confirm pertinent contact information, and query whether any concerns have been raised re: the validity of the business through online reports.

Each listing is verified using the details provided; HeartKids makes every effort to verify these claims. 

It remains the responsibility of the individual and/or their carer(s) to determine if the organisation listed is a suitable choice, and a registered or authorised organisation who is CoHD knowledgeable and suited to the individual’s needs.

For support networks, we have so many different varieties of peer support and organisations listed.

For charities we check the details listed from their website against the Australian Charities and Not-For-Profits Commission register, to ensure details are up to date and adhering to the regulations established by the Australian Government.

Government initiatives are cross-checked from their website, and to the individual state or federal listing to ensure its validity.

For online offerings such as private Facebook groups, we acknowledge that these will be subject to individual group and Facebook user guidelines. We are unable to confirm the level of support or services offered through some of these platforms (particularly private Facebook groups) and encourage users to exercise caution when interacting with others in these spaces.

For online offerings through private Facebook groups or online forums, it is unlikely that any significant personal details or banking information needs to be provided to join. 

We encourage all users of these platforms to familiarise themselves with the ACCC Scamwatch webpage, and be cautious of sharing details that may be used for financial or personal benefit.

It remains the responsibility of the individual and/or their carer(s) to determine if these private groups are suitable for use, and acting in good faith of supporting our community.

There are three categories to choose from. Toggle between the categories to search for health care professionals, organisations, or support networks.

For Health Care Professionals:

Use the search bar to enter a name of a health professional, or a key word related to your search. Such as “Dr Smith”, or “Paediatric cardiologist”

This will return you related results, which you can narrow down by using the additional criteria of a postcode search or language search.

You can view the listed result by clicking ‘view’ on the right hand side of the page.

For Organisations:

Use the search bar to enter the name of an organisation, or a key word related to your search. Such as “Wesley Hospital” or “Westmead Heart Centre”

This will return you related results, which you can narrow down by using the additional criteria of type of organisation (public or private), or type of service, such as “cardiology”

You can view the listed result by clicking ‘view’ on the right hand side of the page

 For Support Networks:

Use the search bar to enter the name, or key words to search for a support network, or theme of peer support. Such as ‘carer’ or ‘bereaved’

This will return you related results, which you can narrow down by using the additional criteria of group type, or main activity.

You can view the listed result by clicking ‘view’ on the right hand side of the page.

If you notice a listing that needs to be updated please click here to submit a change request.