Oriana Sousa was one of the Young Citizens representatives on Rare 2030-
Foresight in Rare Diseases Policy. She became a patient advocate due to
her own journey with a rare cancer. When she faced the diagnose in 2011,
she found the need to self-advocate to find a treatment that could offer
her a real possibility of surviving. She was surprised by the lack of
knowledge and response in her national healthcare system leading her to
look for innovative therapies in private hospitals and cross boarder. She
suffered several relapses and anytime she faced a relapse, she needed to
quickly decide the next step in her treatment, since her cancer type put
her life at risk in few weeks. Oriana ended up succeeding to find the right
treatment and she became the first patient of her type of cancer doing
immunotherapy. She entered in a complete remission and she is out of
any cancer treatment since 2017.
By joining online communities she was in touch with other rare cancer
patients and realise that the barriers she found were also experienced
among many others from different countries.
In 2021, Oriana graduated as Patient Expert in EUPATI and has been
involved in several patient engagement initiatives through advisory
boards and patient committees across several European Projects with the
aim of ensuring that the patient's voice is listened and patient’s needs are
validated. Oriana holds a Master Degree in Psycho-oncology and passed
her routine working as a licensed therapist and as a patient
coordinator at merakoi. She is passionate for living and feels really
inspired by listen other

patients’ stories and learn how they overcome difficulties. She really
enjoys to travel, workout and lives with her loved husband and her super
special cat.