Powering up the voices of the youth rare disease community
Genetic Counselling
Aoife Gavan
Being diagnosed with a genetic condition can be life changing and bring on a range of emotions, questions and uncertainties. Genetic counsellors are there to listen and help you and your family work through this.
Listen to Aoife discuss more on genetic counselling and learn from her personal experiences.
Family Planning
Sorcha McElchar
Family planning involves considering the options available to you when you are thinking of having a child. Family planning with a genetic condition can be difficult, especially as a young person.
Listen to Sorcha discuss more on family planning and the options available to those living with genetic conditions.
Prenatal screening
Katie Callaghan
Prenatal screening involves screening your unborn child for any potential genetic conditions or health risks. When living with a genetic condition, you may want to choose to have this screening to help identify whether your baby may be born with any health issues.
Listen to Katie discuss prenatal screening further in this video.
Newborn Screening
Chelsea Wong
A few days after birth, some tests will be offered for your newborn baby to see if they may have some certain health conditions. These tests aim to ensure health conditions are identified and treated as soon as possible. Those living with a genetic condition are often keen for their baby to undergo this screening.
Listen to Chelsea discuss more about newborn screening in this video.
Resources
Meet The Team
Katie Callaghan
Katie is 21 years old and lives with Ehlners-Danlos syndrome and Chronic intestinal pseudo-obstruction.
Chelsea Wong
Chelsea is 23 years old and lives with lupus.
Aofie Gavan
Aoife is 18 years old and lives with scoliosis and Friedreich's ataxia.
Katrina Brooks
Katrina is 23 years old and lives with lupus.
Sorcha McElchar
Sorcha is 23 and lives with APS 1 syndrome.