COVID-19 Information and Resources

A note from our CEO on COVID-19:

To our wonderful NET community we stand with you and alongside you as we get through this unprecedented situation together. Please know we will do everything we can to support you, whilst working hard to ensure that services and treatment are uninterrupted. We know this is a difficult situation for everyone and anxiety is high but know we will do everything we can to help. 

As we continue to expand the way we are practicing social distancing and as our support groups, meetings and day to day interactions move to online services. We wanted to take this time to reassure our community that we are set up for moving everything online and will continue to offer quality support services to our patients.

As a small team, we have offered working from home employment to all of our staff since our inception over ten years ago. We have all of the technology and resources required to keep our organisation running smoothly and we remain here to support our neuroendocrine community.

We will continue to update this page with important COVID-19 information as it is provided to us from government and medical authorities.

We send love to all of our patients, carers, healthcare professionals and stakeholders in these unprecedented times.

Stay safe

Simone Leyden
CEO and Co-founder
Neuroendocrine Cancer Australia

A note from our NET Nurse on COVID-19:

There are a number of very helpful resources below, which will give you up-to-date information about what you can do to protect yourself and the community from Coronavirus (COVID-19). There are some particular points, which are very relevant to those with NETs, which I’d like to highlight:

  • Although many people with NETs may be more vulnerable to COVID-19, there is a large range of variation in terms of the types of tumours and treatments, it’s important to be guided, first and foremost, by information from your health care team.
  • One of the things that is clear in the research to date is that smoking is a significant risk factor for people having poorer outcomes with COVID-19. This is actually the case for those who do not also have cancer, however the rate of complications for those with cancer who smoke is very concerning. If you can, consider reducing or stopping smoking. For more information and resources, see
  • We have received assurances about the stability of the supply chain for medicines that are used in the treatment of NETs. If people are on monthly somatostatin analogues (e.g. Sandostatin LAR or Lanreotide), and worried about leaving the home to attend clinics to have these injections, assistance may be available to have these administered at home. Speak to your specialist, or contact us via this link.
  • It is important that if you’re feeling unwell with symptoms that could be COVID-19, not to arrive unannounced at your cancer centre or clinic. If in doubt, get in touch with them for more advice.
  • It is recommended to have a concise summary of your illness and treatment available, in case you need to present to another health care provider. An ideal format for this is our NET Treatment and Wellness Plan.
  • For those who are having difficulty getting to the shops, several of the larger supermarket chains are now allowing those who are more vulnerable to access home delivery services.
  • Finally, and importantly, we know that having neuroendocrine tumours can be very stressful, regardless of other things. The impact of COVID-19, on top of this, may leave you, and those around you feeling very emotionally vulnerable. It is more important than ever to be gentle with yourself and others, and take the time to engage in all the things that you would normally do to keep yourself well, both physically and mentally. Exercise, eating well, connecting with others (even if this might mean learning a new computer skill) are vital at this time.

As Simone has said, we are here to support you, and this is not changing. We have many groups (which are now meeting online) – see our Support Groups page.

We are also providing more intensive support via our Facebook groups – you can find our main Private Discussion Group and our Private Carers Group at (once you click on “Join Group”, you will be guided to answer three questions, so we can approve your membership).

Please take care, wash your hands, and keep physically (but not socially) distancing. We’re all in this together, and we’re here to support each other through these challenging times.

Kate Wakelin
NET Nurse
Neuroendocrine Cancer Australia

Below is a list of resources that neuroendocrine patients, healthcare professionals and our community may find helpful:

General COVID-19 information and Cancer Care

NeuroEndocrine Cancer Australia Patient Support Groups

All of our patient support groups have temporarily moved online. Please follow the below link for further information:

Managing COVID-19 stress and anxiety

Social distancing and hygiene

Pharmaceutical updates

Clinical trial updates

Healthcare Professional Resources

Additional Patient Resources

The Medical Journal of Australia have fast-tracked the publication of the following article, which draws together what health professionals and scientists know about managing people with cancer during the COVID-19 pandemic:

There is a very useful  patient summary, which has been produced by several cancer patient organisations, including NeuroEndocrine Cancer Australia – you can find this at:

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