Advocacy

Comprehensive Support, Compassionate Care, and Community Empowerment

Our Commitment

to Our Community

At Long Covid Families, we are dedicated to supporting and advocating for every child and adolescent with Long Covid, and their families. Our commitment includes raising awareness and advocating for better research, healthcare, and education for our community.

Why Advocacy Matters

raising awareness

Many remain unaware of the challenges faced by those with Long Covid, especially children. Educating the public and policymakers helps bridge this gap.

Influencing Policy

We work with policymakers to inform policies that address the specific needs of the pediatric Long Covid community, ensuring they receive adequate care and support.

Promoting Research

Research on Long Covid in children lags far behind research with adult populations. We advocate for and inform research agendas to illuminate the unique circumstances and needs of children with Long Covid.

Empowering Families

Families are on the front lines, advocating for the needs and rights of their children. We provide families with information, resources, and support they need to advocate for themselves and their loved ones.

Current Campaigns

Acceleration of Pediatric Long Covid Research

To better understand Long Covid in children, we advocate for increased funding and accelerated research initiatives. Our goal is to ensure that pediatric Long Covid research receives the investment it deserves, leading to effective treatments and improved outcomes for affected children.

Educational Support for Affected Children

Children with Long Covid often face challenges in school. We push for policies that provide accommodations, resources, and support for these children to ensure they receive a quality education without compromising their health.

Comprehensive Healthcare Access

We advocate for policies that ensure comprehensive healthcare coverage for all pediatric Long Covid patients. This includes access to specialists, mental health services, and rehabilitation programs tailored to the unique needs of children and adolescents with Long Covid.

Pediatric Long Covid Awareness Week

Explore the highlights from Pediatric Long COVID Awareness Week 2024

How You Can Get Involved

stay informed

Knowledge is power. Stay updated on Long Covid issues by subscribing to our newsletter and following us on social media. We provide regular updates, action alerts, and resources to keep you informed.

share your story

Personal stories are powerful tools for change. Share your experiences with pediatric Long Covid to help raise awareness and put a human face on the issue. Your story can inspire others and influence policymakers.

contact your representatives

Reach out to your local, state, and federal representatives to advocate for policies that support Long Covid families. We provide templates and talking points to help you communicate effectively with lawmakers.

join our advocacy network

Become a part of our advocacy network to connect with other families, share resources, and collaborate on initiatives. Together, we can amplify our voices and make a greater impact.

Conferences and Events

At Long Covid Families, we participate in conferences and events to advocate for children and adolescents affected by Long Covid as well as their families. These gatherings are vital for raising awareness, sharing research, and collaborating with healthcare professionals, policymakers, and other community members.

Back to School Conferences

In 2022 and 2023, Long Covid Families hosted annual Back to School Conferences dedicated to addressing the challenges faced by children and adolescents with Long Covid as they return to education. These conferences brought together experts, educators, healthcare professionals, and families to discuss strategies for supporting students with Long Covid and advocating for their needs in educational settings.

Hear from the Families

"The conference marked the first occasion I felt truly engaged in conversation as a parent, rather than simply spoken to."

“It was spectacular–The Best. It passionately, articulately, objectively conveyed the frustrating lived experience of adults and children with undiagnosed post viral syndromes in a vivid and relatable fashion.”

Additional Conferences

Long Covid Families has had the privilege of presenting at prestigious events, including events hosted by the World Health Organization and the Global Interdependence Center.

In 2023, founder Megan Carmilani spoke at the Woodcock Institute for the Advancement of Neurocognitive Research and Applied Practice. A version of her presentation can be found here.

In 2024, we participated on a panel at the Demystifying Long Covid Conference in Boston.

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