Advocacy starts with your story, and your voice matters.

This Advocacy One-Pager was created to equip OCNDS families and supporters with a clear, concise tool to educate legislators about Okur-Chung Neurodevelopmental Syndrome (OCNDS), the urgent needs of our community, and the federal policy priorities that impact rare disease diagnosis, care, and treatment.


Whether you are meeting with lawmakers during Rare Disease Week on Capitol Hill, participating in district meetings back home, or engaging elected officials in your state, this resource serves as a leave-behind document that helps policymakers quickly understand who we are, the challenges families face, and the solutions we are advocating for together.


Our one-pager highlights key legislative priorities, including expanding access to genetic services, improving coverage for rare disease treatments, and strengthening pathways to diagnosis and care while also providing an overview of the Foundation’s global research and advocacy efforts on behalf of individuals living with OCNDS.

Advocacy One-Pager

What Is Advocacy

Advocacy means speaking up for what matters and working to create change.


In the rare disease community, advocacy is how families turn lived experience into action. It is sharing your story, educating decision makers, and pushing for policies that improve diagnosis, care, research, and access to treatment.


It can be as simple as:


  • Telling your child’s story
  • Explaining challenges you face
  • Asking leaders to support specific legislation
  • Raising awareness in your community


You do not need policy experience or medical expertise. Your lived experience is your expertise.

Why Advocacy Is Important

For rare diseases like OCNDS, advocacy is often the driver of progress.



Because conditions are ultra rare:


  • Many policymakers have never heard of them
  • Systems are not designed with our families in mind
  • Access to diagnosis and care can be delayed
  • Research funding is limited


When families speak directly to legislators, it puts a human face on policy decisions. It transforms data into real lives and real urgency.

Advocacy is how laws change, funding increases, services expand, and barriers begin to come down.

How Families Can Use This One-Pager

Families and advocates can use this resource to:



  • Share your child’s or family’s story alongside real policy solutions
  • Leave a professional overview during legislative meetings
  • Guide conversations with congressional staff and policymakers
  • Advocate for co-sponsorship of rare disease legislation
  • Educate local leaders about the diagnostic and care gaps facing our community


Your lived experience, paired with clear policy asks, is one of the most powerful drivers of change.

Create Your Own Family One-Pager

Your story is powerful and personal. Many families choose to create a one-pager about their child or family journey to share directly with legislators.


If you would like to create a Family One-Pager, please contact Beth at beth@csnk2a1foundation.org Our team is happy to help you develop your story, highlight your advocacy priorities, and design a leave-behind that complements the Foundation’s policy one-pager.

Our Partnership with the EveryLife Foundation for Rare Diseases

The CSNK2A1 Foundation is proud to partner with the EveryLife Foundation for Rare Diseases (EveryLife), a leading national advocacy organization dedicated to advancing public policies that improve the lives of people living with rare diseases.


Through initiatives like Rare Disease Week on Capitol Hill, EveryLife trains and mobilizes advocates from across the country, including our families, to meet directly with members of Congress and champion legislation that accelerates research, expands access to care, and removes systemic barriers facing the rare disease community.


Their leadership, policy expertise, and grassroots network help ensure that rare disease families are not only heard but are driving meaningful legislative progress.

Get Involved: Advocacy at Every Level

You do not have to travel to Washington, DC to make an impact. Families can advocate for rare disease policies at every level of government.

Building icon with three pillars and a flag on top.

Federal

  • Participate in Rare Disease Week on Capitol Hill
  • Meet with members of Congress and staff
  • Support federal legislation and caucus initiatives
  • Submit written testimony or policy letters
Map of the United States with a location marker, pinpointing a location in the Southwest.

State

  • Advocate for newborn screening expansion
  • Support state Medicaid coverage protections
  • Engage in rare disease awareness proclamations
  • Meet with state legislators in district offices
Black house with a location pin inside; indicating the home's address.

Local

  • Educate school districts and local agencies
  • Build relationships with community leaders
  • Advance inclusion, disability services, and care access
  • Raise awareness through local media and events

Together, our collective voices drive the policies that shape diagnosis, care, research, and treatment.

By sharing this one-pager and your story, you are helping build a future where no rare disease family is overlooked, undiagnosed, or without access to care.