Senior Experience Architect at Salesforce, has seen the importance of promoting patient-focused research firsthand. Angulo’s daughter, Vera, was born with a rare disease called Sturge Weber Syndrome that caused the blood vessels to form improperly on her face, in her right eye, and in her brain, leading to complications such as epilepsy.
“Sturge Weber Syndrome is extremely rare and there are so many unknowns. The symptoms are devastating and significantly affect Vera’s quality of life and our family’s day-to-day. Because of how rare it is, there is not enough research done to know the best way to treat it,” says Angulo.
Angulo partnered with CURE Epilepsy to speak about her daughter’s afghanistan phone number list experience and raise awareness about her rare disease. Founded in 1998 by parents of children with epilepsy, CURE Epilepsy has funded patient-focused research for over 20 years.
By working with organizations driving patient-focused research, researchers can access a more intelligent set of data that offers a more holistic understanding that helps organizations develop therapies that are appropriate to the individual characteristics, needs, preferences, and conditions of the patients.