Dear Solve Community,
As Vice President of Advocacy and Engagement, I’m excited to share our remarkable journey in uniting voices, forging connections, and expanding our community.
In 2021, Solve co-founded the Long Covid Alliance (LCA) and played a pivotal role in its success. Our vision was simple: create a space where all voices affected by post-infection chronic conditions, especially ME/CFS and Long Covid, could be heard, amplified, and empowered.
Over the past two years, the Long COVID Alliance has grown into a powerful force for change, thanks to the dedication of countless individuals and your support of Solve. We’ve seen our community evolve, forming bonds that transcend geographical boundaries and medical diagnoses. Together, we’ve celebrated triumphs, navigated challenges, and most importantly, learned from each other’s experiences.
That hard work has led us to the next chapter in our community building story — the foundations of the Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACC-PAC).
Generously selected for a grant by the CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program, this grant has catalyzed our next phase — a patient-driven report outlining the common needs, priorities, and gaps faced by communities with infection-associated chronic conditions.
In recent months, I’ve been privileged to work with the leadership of the LCA, COVID-19 Longhauler Advocacy Project, Patient-Led Research Collaborative, and Dysautonomia International to make recommendations about how to expand our impact and grow our community.
Together, we’ve created a report, set to be published on October 24th alongside a national webinar, which encapsulates the stories, insights, and challenges faced by our collective communities. It’s a mosaic of experiences that highlights the diverse nature of infection-associated chronic conditions and the resilience of those who navigate them daily. As you read through the report and join us for this webinar, you’ll witness the strength of our community and the commonalities of challenges we face.
Looking ahead, the IACC-PAC is not just a coalition; it’s a movement — an ongoing journey that invites new voices, perspectives, and stories. It’s a reflection of new science, linking more and more chronic conditions to infectious triggers, where our shared experiences fuel a commitment to change. As we continue this journey, I encourage each of you to explore the report, engage with our community on social media, and join us in shaping a future where infection-associated chronic conditions are met with understanding, support, and compassion.
I want to express my gratitude to every individual who has contributed to the Long COVID Alliance and the creation of the IACC-PAC. Your passion, resilience, and commitment have transformed a vision into a vibrant reality. Together, we are not just advocates; we are a force for change, and our collective strength knows no bounds.
With heartfelt appreciation,
Vice President of Advocacy and Engagement
Find more information about our partners below, and learn more about our upcoming event here.
COVID-19 Longhauler Advocacy Project, through community outreach, is able to synthesize information and generate educational resources to bridge knowledge gaps between the patient/caregiver community and healthcare providers, researchers, and government agencies.
Patient-Led Research Collaborative is a group of people with Long COVID and other IACCs that has extensive experience in facilitating and conducting patient-led IACC qualitative and quantitative research for application to federal policy recommendations.
Dysautonomia International has over a decade of experience fostering collaborations amongst patients, researchers, fellow nonprofits, and government agencies to advance patient-centric research on autonomic nervous system disorders and their comorbidities, many of which are post-infectious in nature.