Take Action

Donate 

Join our supporters already fueling breakthroughs that give families hope. Your tax-deductible gift will transform lives affected by DHX30 by powering expert-led research to bring us closer to better treatments and a deeper understanding of neurodevelopmental conditions. 

Donate →

Connect

Connect us with leaders in the research, clinical, biotech, or nonprofit/foundation worlds that are interested in collaborating or lending their expertise. Every insight and introduction can help us advance our mission.

To connect, please reach out on our Contact Us page. 

Advocate

Champion stronger policies and resources for our loved ones affected by rare disease. Stay informed through advocates like the National Organization for Rare Disorders (NORD) and EveryLife Foundation.

If you are in the US, find and reach out to your representative at Congress.gov.

Amplify 

Leverage your network and share information about DHX30 Syndrome and the Rare Remy Foundation’s efforts online and in your community. Raising awareness is one of the most powerful ways to bring more interest and resources to our efforts. 

Fundraise 

Provide researchers the fuel to make a difference in DHX30 patients’ lives by helping us raise funds for DHX30 research. Some ideas include: organizing a fundraising event or activity, launching a social media campaign with friends, sharing our Donate page with your network, or asking for donations in lieu of gifts. 

Volunteer

Lend your professional expertise in legal, marketing/social media, research, fundraising, project management, consulting, or beyond. Organizations like National Organization for Rare Disorders (NORD) list ways to volunteer or our DHX30 organizations could always use more help. Rare disease teams are lean and cherish skilled volunteers who directly support our mission.

For Families: Participate in Research

Every breakthrough in DHX30 research starts with DHX30 families who choose to engage with and support researchers. If you’re a parent, caregiver, or patient, and your family is interested in taking part in DHX30 research, we’ve prepared a special section for Families describing our current research opportunities.