Caregiver raising awareness for rare genetic disorder
Hereditary ATTR (hATTR) amyloidosis is a rare, life-threatening condition that affects 50,000 people worldwide.
The degree and severity of hATTR amyloidosis vary from person to person and may lead to morbidity, disability and a shortened life expectancy.
The condition has run in Angel Male's family for generations. She's tested negative for the gene mutation that causes it, but she is a caregiver and advocate for those in her family with hATTR amyloidosis, including her mother.
Male partnered with Alnylam Pharmaceuticals to share her story in a downloadable booklet called Living a Rare Life, raising awareness of the condition and encouraging those who may be affected to get a diagnosis and learn more about it.
She joined us on Good Day Rochester to explain more about the mission.