Your experience. Better trials. Better outcomes.

If you or a loved one has been impacted by cocci meningitis, there are several ways you can participate, based on your comfort level and how you’d like your experience to be shared:
  • During the meeting
  • For inclusion in the meeting report only (Video, Written, or Oral
  • As a Panelist
  • Participate in Discussion, Breakouts, or Q&A
Tell us about your interest!

Thank you to our supporters!

MyCARE Foundation – Externally Led- Patient Focused Drug Development Meeting

CNS Disseminated Coccidioidomycosis (Cocci Meningitis) – April 14 2026

Why this meeting matters

The MyCARE Foundation is bringing together patients, caregivers, clinicians, researchers, industry partners and regulators on Tuesday, April 14, 2026 for a dedicated session on central nervous system (CNS) dissemination of Coccidioides (Cocci meningitis). As noted on FightFungus.org, while many infections of Cocci may resolve, the disseminated/CNS form is a high-impact condition with serious outcomes and long-term care needs.

This meeting presents a unique opportunity for the Cocci meningitis community to share lived experience, surface unmet needs, and shape the future of treatment development, diagnostics, and support pathways. The outcomes will feed into a “Voice of the Patient/Caregiver” summary and be shared with developers and regulatory bodies.

Why your voice matters

The journey of CNS Cocci is often hidden, under-recognized, and highly variable. As described on FightFungus.org, many patients live with long-term sequelae and need frequent follow-up, yet there are limited data and few treatments formally approved.

By sharing your story, you help ensure that the patient voice becomes a central pillar in therapy development and regulatory evaluation—not just an afterthought.

What Is an EL-PFDD Meeting?

An EL-PFDD meeting is a unique opportunity that puts patients, their families, and other direct caregivers at the center of drug development conversations. The goal of this meeting is to provide the U.S. Food and Drug Administration (FDA), product developers, clinicians, and academic researchers an opportunity to hear perspectives from individuals with Cocci meningitis on the health effects and daily impacts of their Cocci meningitis, treatment goals, and decision factors considered when seeking out or selecting a treatment.

This meeting is being conducted as a parallel effort to FDA’s PFDD initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat their conditions. Your input can help the FDA, medical product developers, clinicians, and academic researchers make better informed decisions during drug development and during review of marketing applications for potential treatments, shaping decisions that affect the entire coccidioidomycosis community.

How to Participate:

  1. Register via the MyCARE Foundation website using the form on this page.
  2. If you are interested in participating, please complete the “Request to Participate” form by March 1, 2026. Participation opportunities include serving as a panelist, contributing to the discussion during the meeting, submitting written comments, or sharing your experience through a short video submission. Please indicate your preferred method(s) of participation on the form, and a member of our team will follow up with you regarding your request.
  3. All registrants may attend the full live meeting and may submit written comments in through the link to the form below if unable to speak live.
  4. We will provide orientation & prompts to help you prepare your remarks—the focus is on your experience, your voice, your priorities.

Who should attend?

We encourage participation from:

  • Patients and survivors of Cocci meningitis (at any stage)
  • Family members and primary caregivers

We encourage attendance in listening mode from:

  • Healthcare professionals (infectious diseases, neurology, neuro-infectious disease, mycology)
  • Clinical researchers and trialists in fungal disease

What to Expect

  • A morning plenary with an introduction to the epidemiology, pathophysiology, and standard of care for CNS Cocci.
  • Patient-led panels describing day-to-day impact: symptoms, diagnosis journey, treatment burden, quality-of-life.
  • Large group facilitated discussions on key themes:
    • Experiences with diagnostic delays
    • Health effects and daily impacts
    • Current therapies versus unmet needs
    • Designing patient‐centered outcome measures in CNS fungal disease
  • Summary plenary & next-steps: how voices from this meeting can inform research, regulation, and care.
  • A draft “Voice of the Patient/Caregiver Report” circulated afterwards for community review.

Agenda

8:00 AM: Welcome

8:05 AM: Opening Remarks

8:10 AM: Clinical Overview and Background on Cocci Meningitis

8:20 AM: Overview of Discussion Format

Topic 1: Health Effects and Daily Impacts of Cocci Meningitis

8:25 AM: Panel Discussion

8:50 AM: Large-Group Facilitated Discussion

9:50 AM: Break

Topic 2: Current Approaches to Treatment of Cocci Meningitis

10:10 AM: Overview and Background on Current Gaps

10:20 AM: Panel Discussion

10:45 AM: Large-Group Facilitated Discussion

11:45 AM Meeting Summary

11:55 AM: Closing Remarks

Noon:  Adjourn

Frequently Asked Questions (FAQs)

Q 1: What is an Externally-Led Patient-Focused Drug Development (EL-PFDD) type meeting?
A: This is a patient-centered forum — hosted by MyCARE, not the regulator — where patients, caregivers, and advocates share their lived experience directly with researchers, clinicians, developers, and regulatory attendees. The aim is to highlight what truly matters in daily life and how new treatments, diagnostics, or care models should reflect the priorities of the community.

Q 2: Why focus on CNS Cocci?
A: While pulmonary Cocci is more common, dissemination to the CNS (often resulting in meningitis, hydrocephalus, and the need for prolonged antifungal therapy) poses a high burden of disease, long duration of care, and significant unmet needs. Highlighting this subgroup is critical to elevating understanding and driving innovation.

Q 3: Who can submit a “story” and what does that mean?
A: Any person with a lived experience of CNS Cocci (patient or caregiver) may submit a short video or speak live. We’ll provide prompts and orientation to assist you. The focus is on sharing what living with this condition is really like: best days, worst days, what matters most to you, and how care/treatments could improve.

Q 4: I am not comfortable speaking out loud — can I still attend?
A: Absolutely. You’re welcome to attend virtually, participate in polls during the event, and submit stories or written comments. Your participation strengthens the collective voice.

Q 5: Will the regulator (U.S. Food and Drug Administration) be present?
A: Yes—it is expected that FDA staff will attend in a listening role. Their attendance does not imply endorsement, but your story can help inform regulatory thinking and product‐development planning.

Q 6: Will this meeting lead to a publication or report?
A: Yes. A “Voice of the Patient/Caregiver Report” will be prepared as a summary of the meeting and distributed broadly. It will be publicly accessible and intended as a resource for developers, regulators, and the community.

Q 7: Do I need to travel or is it virtual?
A: The full meeting is available virtually.

Q 8: Is translation or closed-captioning available?
A: Live captioning will be provided; translation depends on demand. Please indicate your needs on the registration form.

Q 9: How will my personal data/story be used?
A: You will be asked to provide consent. Your identity will be protected unless you explicitly choose to be identified. The report will aggregate themes and anonymize individual submissions unless otherwise agreed.

Q 10: What happens after the meeting?
A: Beyond the report, MyCARE will continue to engage the community, disseminate findings, liaise with FDA/industry, and foster research/advocacy collaborations. Your input helps shape the next phase of care improvement.

About MyCARE Foundation

The Mycology Advocacy, Research & Education (MyCARE) Foundation is the first pan-fungal patient-advocacy organization, dedicated to giving a voice to patients with serious fungal infections and their caregivers.