NF Awareness

NF1 and Breast Cancer

NF1 and Breast Cancer Awareness: Towards Unified Care and Early Detection

In the rare disease community, breast cancer awareness is critical, especially for patients with conditions like NF1, where the risk is significantly higher. Women with NF1 face a 5-fold increased risk of developing breast cancer, and early detection is key.

According to European guidelines, screening should start around age 30 – much earlier than for the general population. Yet, despite these recommendations, inconsistencies in treatment approaches across Europe remain. It’s crucial that standardized protocols are developed and that best practices are shared among healthcare professionals.

Fact sheet about Breast Cancer in NF1

Additionally, the patient voice is essential. Gathering patient-reported outcomes helps to refine and improve standards of care, ensuring that treatments are tailored to the needs and experiences of patients. Patient insights can drive meaningful changes in care practices and foster better healthcare outcomes.

We call on the medical community to actively disseminate guidelines and ensure patients at higher risk are informed and protected. Please share this message to help spread the word and encourage patients to take proactive steps in managing their breast cancer risk.