Advocacy - FOXP1 Foundation

Advocacy

Advocacy turns our experiences, challenges, and hopes into action. Every story shared helps policymakers better understand FOXP1 syndrome and the needs of our community. When we raise our voices together, we can help shape policies that advance research, improve access to diagnosis, care, and services, and build a future full of possibilities for everyone affected by FOXP1 syndrome.

Get Involved

Ways to Get Involved

You do not need to be a policy expert to become an advocate. Advocacy can begin with one simple action:

Sharing your family's story
Participating in Rare Disease Day activities
Helping others understand the needs of people affected by FOXP1 syndrome
Staying informed about policy issues affecting the rare disease community
Responding to an action alert
Attending an advocacy event or virtual meeting
Contacting your representatives

Whether you have five minutes to send an email or want to become more involved, your voice has value.

Around the World

Advocacy Around the World

While some of the opportunities shared here focus on policy in the United States, FOXP1 advocacy is global. Families everywhere can raise awareness, share the needs of their local communities, and connect with organizations working to improve rare disease policy in their country.

If you know of an advocacy opportunity that may benefit the FOXP1 community, we invite you to share it with us.

Every Voice Matters

When families, advocates, and organizations work together, the FOXP1 community has a stronger voice. By sharing our experiences and taking action, we can help build a future where every person affected by FOXP1 syndrome has the opportunity to thrive.

Learn More

Community Congress

The International FOXP1 Foundation is a member of the EveryLife Foundation for Rare Diseases Community Congress, a coalition that brings together patient organizations, industry leaders, and other rare disease stakeholders around shared policy priorities.

Through this membership, we stay connected to emerging policy issues, contribute the perspective of the FOXP1 community, and join broader efforts to advance meaningful change for people living with rare diseases.

Deep Dive

EveryLife Foundation: Community Congress

Additional information about the Community Congress coalition and ongoing advocacy efforts from the EveryLife Foundation for Rare Diseases.

Learn About Community Congress

Executive Director Brandi Underwood represented the International FOXP1 Foundation at the EveryLife Foundation’s 15th Annual Scientific Workshop, joining leaders from the FDA, industry, academia, and patient advocacy to discuss patient-centered rare disease drug development. Following the workshop, she joined other rare disease leaders for meetings on Capitol Hill as part of the inaugural Community Congress Leader Hill Day.

Take Action

NORD’s Rare Action Network® (RAN)

The International FOXP1 Foundation partners with the National Organization for Rare Disorders (NORD) to help amplify the voice of the FOXP1 community within the broader rare disease movement. Through NORD’s Rare Action Network, families and advocates can stay informed on rare disease policy issues, respond to current action alerts, and contact their elected officials on the issues that matter most.

Take Action

NORD’s Rare Action Network® (RAN)

The National Organization for Rare Disorders offers opportunities for individuals and families to make their voices heard through its Rare Action Network and Rare Action Center. Through NORD's current action alerts, advocates can learn about important rare disease policy issues and quickly contact their elected officials.

Learn More & Take Action

NORD’s Rare Action Network connects advocates with timely policy updates and opportunities to make their voices heard.

Get Involved

Stay informed on advocacy opportunities

Subscribe to the Foundation newsletter for upcoming campaigns and ways to make your voice heard.