As you will have heard the Government has recently recommended that people under 50 years of age are given the Pfizer vaccine rather than AstraZeneca. We know that this may have resulted in the postponement of vaccinations for some of our community. It is a confusing time with information and expectations changing rapidly. Unfortunately, at this stage, there is no specific advice for people with TSC, and it seems unlikely that there will be in the short term. We can certainly understand and sympathise with why members of our community may be feeling frustrated by the lack of certainty.
Researchers at Melbourne University and the Australian Genomics Health Alliance would like your feedback. They are working on a project for which they are searching for participants to give feedback on the effect of the COVID-19 crisis on the quality … Read More
Talking to children about this virus isn’t always easy. The NSW Department of Health has released a great booklet to help parents talk to their young children about COVID-19. We thought you might find this a helpful resource for your … Read More
We would like to invite our TSC Community to join in a very time-sensitive, international research project aimed at finding out how individuals with special needs are coping with the coronavirus (COVID-19) pandemic and all its repercussions. Dr Ru Ying … Read More
On 8 April 2020, Rare Voices Australia (RVA), in conjunction with its Scientific and Medical Advisory Committee, issued this statement calling for the development of critical care guidelines for Australians living with a rare disease to inform Australian hospitals and … Read More
You may find the following tips for parents and carers in the time of COVID-19 a helpful resource. This information was shared with us by Prof Petrus de Vries, a child and adolescent psychiatrist at the University of Cape Town, South Africa who specialises in TAND (TSC Associated Neuropsychiatric Disorders).
The outbreak of the coronavirus COVID-19 has impacted people in many and varying ways all around the world. It is understandable that during this global pandemic people may be feeling afraid, worried, anxious and overwhelmed by the constantly changing alerts and media coverage regarding the spread of the virus. It is normal to feel stress about this uncertain situation. We have gathered some wellness resources to help you and your family manage your wellness and wellbeing during these times.