“We are visible”
“We are visible”, trailer 1, is an Eurordis short film about people living with Ehlers-Danlos syndrome around the world.
Ebony’s story about a rare disease patient’s resilience
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Ebony is a Rare Voice Australia (RVA), and aged 16, she was lately diagnosed with Superior Mesenteric Artery Syndrome (SMAS), an intestinal failure that requires home parental nutrition (HPN). The HPN is a life supportive therapy that is carried out in the home setting… Long-term parenteral nutrition is associated with significant morbidity and mortality and due to the invasive and serious nature of the treatment, the gastrointestinal illness and multiple surgeries prior to commencing HPN, living with HPN has posed psychological challenges. Ebony’s story highlights the importance of diagnosis, how treatment can be life changing, and the challenges that many people living with a rare disease face on a daily basis.
Chris Walker named New South Wales's Grandfather of the Year
The President of Rare Voices Australia (RVA) Partner Parental Nutrition Down Under (PNDU), Chris WALKER, was formally recognised for his important work. He was recently named New South’s Wales Grandfather of the year. The RVA President is dedicated to helping to care for his two grandsons who are living with a rare disease.
