• Project status: Active
Happy multi generational people

Aiming to understand life for adults with RASopathies like Noonan Syndrome and Neurofibromatosis type 1 (NF1).


RASopathies are a collection of related genetic conditions including Neurofibromatosis type 1 (NF1) and Noonan, Cardiofaciocutaneous (CFC), Costello, and Legius syndromes. While these conditions are most often diagnosed in childhood, they may continue to present health and psychosocial challenges throughout a person’s lifespan.


The SOAR (Studying Outcomes in Adult RASopathies) Study aims to help researchers and clinicians who care for people with these genetic conditions understand what it’s like to live with them in adulthood.

This research is important as it will help identify areas of health and general life that may be challenging for some adults with RASopathies, which may improve clinical care.

Get involved

If you are an adult aged 18 to 65 with a RASopathy living in Australia or the UK, you can participate in the online SOAR study.

You will be asked to complete a series of online questionnaires that ask about physical and mental health as well as quality of life. Participation may take up to two hours across two sets of questionnaires. You may choose to complete one or both sets.

After participating, you may also choose to nominate a relative and/or a significant other (such as a partner or carer) to join in the study with you and answer some questions on their own.

If you are a relative or significant other and would like to participate without a nomination from the person with a RASopathy due to a special circumstance, please contact our team via email to discuss.

Find out more or register for the study:

Get involved

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