Research Keyword: Patient advocacy

Advancing Patient Advocacy in Mycology: Cultivating Collaboration in Education, Research, and Policy

This paper highlights how patients with fungal infections and their caregivers are rarely included in discussions about healthcare policies and research funding, unlike patients with cancer or HIV. The authors argue that fungal diseases deserve more attention and resources, and that listening to patient experiences is essential for improving how these diseases are prevented, diagnosed, and treated. They propose that dedicated advocacy organizations, like the MyCARE Foundation, can help bridge this gap and ensure fungal infections receive the policy support and research investment they need.

Read More »

Shared Vision for Improving Outcomes for Serious Fungal Diseases: Report of a Patient, Caregiver, and Clinician Summit

Patients with serious fungal infections face significant challenges including long delays before diagnosis, substantial emotional and financial burden, and lasting effects on quality of life. A summit brought together patients, their caregivers, and fungal disease experts to share experiences and identify priorities for improving care. The group identified needs for better diagnostic tools, new treatments, improved medical education about fungal diseases, and patient support programs to help future patients and their families navigate fungal infections more effectively.

Read More »

Advancing Patient Advocacy in Mycology: Cultivating Collaboration in Education, Research, and Policy

Fungal infections are a serious public health problem, but unlike cancer and AIDS, they lack strong patient advocacy movements to raise awareness and secure funding. This paper argues that patients with fungal diseases have important insights about their care needs that could help improve policies and research if their voices were heard. The authors propose establishing unified advocacy organizations, like the MyCARE Foundation, to bring patients, doctors, and policymakers together to better address this neglected health challenge.

Read More »
Scroll to Top