Andie's Story - Living with a Rare Disease скачать в хорошем качестве

Andie's Story - Living with a Rare Disease

For most of her life, Andie’s family didn’t know why the left side of her body was larger than her right and why she had facial and dental abnormalities, along with vision and hearing impairment. It was through global collaboration that doctors finally received the diagnosis of an extremely rare condition, RHOA related mosaic ectodermal dysplasia. Andie’s condition is extremely rare, but she is not alone. More than 63,000 West Australian children are living with a rare disease, and they need your support. Rare diseases place an immeasurable burden on families. Some children wait years for a diagnosis – the average is five, and 50% are misdiagnosed, often more than once. It is a lonely and stressful journey, but research can give parents some answers. With your support we can give these children a better quality of life and relieve the immense toll on families. Make a tax-deductible donation to Perth Children’s Hospital Foundation by June 30 to fund life-changing research and care. Donate Now: https://pchf.org.au/tax-appeal/