Advocacy for the DCC Community
Why Advocacy Matters
Disorders of the corpus callosum are under-recognized and under-researched conditions that can have significant impacts on communication, motor coordination, cognition, and social development. Because DCCs are rare and often misunderstood, many families face barriers to diagnosis, intervention, and long-term support.
Through advocacy, we can:
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Educate policymakers about the unique needs of the DCC community
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Secure increased federal and state funding for research and services
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Encourage equitable access to special education, therapies, and disability support
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Promote inclusion, awareness, and acceptance in schools, workplaces, and public spaces
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Influence data collection and diagnostic practices at the national level
How to Advocate
1. Join the NODCC Community
As a member, you’ll gain access to valuable resources, stay informed about the latest research and events, and connect with families, professionals, and advocates who share your journey.
2. Know Your Representatives
Use this tool to find your elected officials:
https://www.usa.gov/elected-officials
3. Send an Email or Letter
Personal stories make a powerful impact. Here’s a sample message you can use and customize:
4. Call Your Legislators
A short phone call can leave a lasting impression. Simply say:
“Hi, my name is [Your Name], and I’m calling to ask [Senator/Representative] to support increased funding and awareness for disorders of the corpus callosum and other rare neurological conditions. Families like mine are counting on you to invest in rare disease research and support.”
Find direct numbers for your members of Congress here:
5. Share on Social Media
Raise awareness by tagging your elected officials and sharing your DCC story using hashtags. Here are the NODCC’s common hashtags:
- #livingwithdcc – Highlights personal stories and experiences of individuals living with DCC.
- #DCCAwarenessDay – Promotes DCC Awareness Day on July 2nd, a day dedicated to educating the public about disorders of the corpus callosum.
- #nodcc – General hashtag for the National Organization for Disorders of the Corpus Callosum, used to tag content related to the organization’s activities and initiatives.
- #RareDiseaseDay – Used to participate in the global Rare Disease Day campaign, raising awareness for rare conditions like DCC.
Get Involved in Rare Disease Advocacy
Advocacy Is for Everyone
You don’t need to be a policy expert to be an advocate. All you need is a willingness to speak up. Whether you’re writing your first email, attending a Rare Disease Day event, or meeting with a local official, your efforts matter. Together, we can create a more inclusive and supportive world for individuals with DCC.
Have questions or want support as you start advocating? Contact our Advocacy Team at [email protected] for guidance, sample materials, or to share your advocacy story.
Let’s make our voices count.