An urgent call for awareness of CUP

Claudia Kouwenberg died from an aggressive form of cancer known as cancer of unknown primary (CUP). As CUP Awareness Week approaches, her husband Peter is telling their story in a bid to educate the public – as well as medical professionals – about why access to molecular diagnostics would have given them the answers they […]

DNA tests for tumours can be a game-changer

Patient story: A cutting-edge DNA test put Inke Logtenberg on the right treatment path. Now she hopes others with Cancer of Unknown Primary (CUP) will have swift access to personalized care Inke knew something wasn’t right. She had some swelling in a lymph node in her groin, prompting a trip to the doctor. After a […]

A personal plea for personalized medicine

Warnyta Minnaard lost her partner, Hederik, to Cancer of Unknown Primary (CUP). Heartbreak inspired her to spearhead a campaign for the reimbursement of whole genome sequencing in the Netherlands so that others might be spared the same fate Hederik was just 32 when he became ill three years ago. It began with a drooping eyelid […]

“Every day matters”: What it means to have a rare disease

Patients with rare disease often do not have a voice and rely on strong support from family, carers and trusted advocates. On Rare Disease Day 2021, FT3 speaks to advocates for those with a rare disease, who outline the barriers and roadblocks to obtaining a prompt diagnosis and the best possible personalized treatment. Warnyta Minnaard […]

Why accessing precision medicine can be an impossible task for those with a rare disease

February 28 2021 marks the fourteenth international Rare Disease Day coordinated by EURORDIS. This global event offers patients, families and caregivers the opportunity to raise awareness and share their experiences of living with a rare disease and the arduous journey they often face as they seek diagnosis and treatment for their condition. It is thought […]