The World Health Organization has announced the members of the first Taskforce of Antimicrobial Resistance (AMR) survivors. The members of the Taskforce will serve as champions who can help shape the AMR narrative globally and influence policies that affect AMR. They will also contribute to improvements in AMR messaging so that the ‘human face’ of AMR is presented alongside messages that increase awareness of AMR.
Fungal infections have received a lot of attention lately. For those impacted by these diseases and those caring for them as caregivers or clinicians, the attention is long overdue. In 2022, the World Health Organization released a priority list of fungal infections, identifying the fungal diseases of most concern. Hollywood also brought attention to fungal diseases through the series The Last of Us, and increased the amount of media attention surrounding these diseases. Often, the challenges of diagnosing and treating severe, chronic or invasive fungal infections (IFIs) is exacerbated by a lack of vetted information, guidance, institutional access, resources, and peer support for patients and their caregivers. Many patients and caregivers suffer in silence, not knowing where to turn when they hit informational, financial, or resource road blocks.
Patients with invasive or severe fungal infections need advocacy, but a pan-fungal advocacy effort has not been available–until now. Drawing upon the seminal patient-directed work of groups such as the Valley Fever Institute and the Mycoses Study Group Education & Research Foundation (MSGERC), we have launched Mycology Advocacy, Research & Education, MyCARE. MyCARE is the first pan-fungal patient advocacy effort. Learn more about our mission and our inaugural event, the Pan-Fungal Patient/Stakeholder IFI summit, being held May 19-May 20th, 2023.
The mission of MYCARE includes education, including supporting stakeholders and elected representatives in their educational efforts.
Representative Michael Burgess, MD (TX-26) used his time at the House Energy & Commerce Hearing on “Antimicrobial Resistance: Examining an Emerging Public Health Threat” held on April 28, 2023 to educate the committee on the growing impact of Valley Fever and other fungal infections. MYCARE Founding Member Rob Purdie’s efforts are specifically mentioned in the response from Kevin Outterson, ESQ, Executive Director of CARB-X.
MyCARE is a valued educational resource for stakeholders, elected officials, media, the public, and most importantly, patients and caregivers. To continue our mission, we need your help. Please consider sharing your experience as well as what resources would be beneficial to you.