NKH Crusaders

06/18/2026

Tonight is Rare Connections.

Join us at 8:00 PM EST for an evening of support, conversation, and connection with fellow rare disease caregivers. Whether this is your first meeting or you've joined us before, we'd love to see you there.

Last-minute registration is welcome: https://www.nkhcrusaders.com/support-group

💙 Alone we are rare, together we are strong. 💛

06/17/2026

🐝 Join the 100: Your Voice, Your Impact 🐝

As caregivers, we've all been there.

A specialist asks a question about something that happened three years ago. A medication change. A hospital stay. A lab result. A therapy recommendation. And suddenly you're trying to piece together years of medical history from memory.

Citizen Health was built to help.

https://www.citizen.health/ai-advocate/nkh-crusaders

By securely gathering your loved one's medical records into one place, Citizen Health gives you access to an AI Health Advocate that can help answer questions about your child's medical journey, identify patterns, summarize records, and help you prepare for appointments.

Instead of searching through binders, portals, emails, and notes, imagine having a tool that can help you make sense of the full picture.

And while it helps your family navigate complex care, your participation also contributes to the future of NKH research.

One platform. Two powerful impacts.

💙 Better access to your medical information.
💛 Better data for researchers working to understand NKH.

Join the 100 today and discover how Citizen Health can support both your family and the entire NKH community.

https://www.citizen.health/ai-advocate/nkh-crusaders

Get instant answers from your NKH medical records. Partnering with NKH Crusaders, Citizen Health helps patients and caregivers centralize records, navigate care, and advance research.

06/16/2026

Thank you to everyone who joined us last night for our Bee Involved Volunteer Information Meeting.

We were encouraged by the number of people who took time out of their evening to learn more about the work happening behind the scenes at NKH Crusaders and the many ways volunteers help make it possible. From supporting families and caregivers to advancing research, advocacy, fundraising, and community programs, every volunteer helps move our mission forward.

If you are feeling called to make an impact, there is still time to apply. Volunteer applications will remain open through June 30th for this selection cycle. Whether you have a few hours each month or are interested in taking on a larger role, we invite you to bee involved.

Together, we can strengthen support for families, expand opportunities for our community, and continue driving research toward better treatments and ultimately a cure for NKH.

Thank you for helping us build a brighter future for those affected by NKH. 🐝💙

06/15/2026

Last chance to register! 🐝

Our Bee Involved Information Meeting starts tonight at 7:30 PM ET.

If you care about advancing NKH research, supporting families, building community, or simply learning more about how NKH Crusaders operates, we invite you to join us.

Every volunteer hour, every fundraiser, every shared idea, and every act of service helps move this mission forward.

There's still time to sign up and Bee Involved.

https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

💙 Research.
💛 Support.
🐝 Action.

See you tonight!

06/15/2026

🐝 Today's the Day! 🐝

Tonight at 7:30 PM ET, join us for our Bee Involved Information Meeting.

We'll share volunteer opportunities, discuss how peer-to-peer fundraising is making a real impact, and talk about the growing needs of NKH Crusaders as we continue funding research and supporting families around the world.

If you've been looking for a way to get involved, this is the perfect place to start.

We hope to see you tonight! 💙💛
https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

Join NKH Crusaders on Monday, June 15 at 7:30 p.m. Eastern Time for an informational session about the future of our organization and the many ways supporters can help advance our mission. During this session, we will provide updates on the organization's current needs and priorities, discuss the gr...

06/12/2026

What could happen if every person in our community gave just a few hours a month?

More families supported.
More awareness raised.
More opportunities to fund research.
More hope for the future.

Join us Monday, June 15 at 7:30 PM ET for our Bee Involved Information Meeting and learn how volunteers and peer-to-peer fundraisers are helping fuel the mission of NKH Crusaders.

There is a place for everyone here. 🐝
https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

06/11/2026

Some conversations only make sense with people who have lived a similar experience.

Join us Thursday, June 18 at 8:00 PM EST for Rare Connections. Connect with fellow caregivers, share your experiences, exchange support, and spend time with people who understand the unique challenges of rare disease caregiving.

Register here: https://www.nkhcrusaders.com/support-group

💙 Alone we are rare, together we are strong. 💛

06/10/2026

Every breakthrough begins with people willing to take action.

From supporting families and raising awareness to helping fund research, volunteers play a critical role in everything NKH Crusaders accomplishes. If you've ever wondered how you can contribute to the mission, this meeting is for you.

Join us June 15 at 7:30 PM ET to learn about volunteer opportunities, peer-to-peer fundraising, and the many ways you can help us advance research and support families affected by NKH.

🐝 Come see how you can Bee Involved.
https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting

06/09/2026

🐝 Join the 100: Your Voice, Your Impact 🐝

⏳ 40 Days to Go! ⏳

We're officially more than halfway through our 100 by 100 Campaign, and every NKH patient who joins the Citizen Health Registry brings us one step closer to a stronger future for our community.

Research needs real-world data. It needs the stories, experiences, treatments, challenges, and victories that only patients and caregivers can provide. Without patient participation, researchers are left trying to solve a puzzle with missing pieces.

https://www.citizen.health/ai-advocate/nkh-crusaders

By joining Citizen Health, you're doing more than contributing to research. You'll gain access to a powerful AI Health Advocate that can help organize and make sense of years of complex medical records, giving you a clearer picture of your loved one's healthcare journey.

Your records remain secure. Your family remains in control. Your experience helps drive discovery.

If you haven't enrolled yet, now is the perfect time to join the 100 and help ensure that the NKH community is represented in the research that shapes tomorrow's treatments.

💙 40 Days Remaining
💛 More Than Halfway to Our Goal
🐝 Join the 100: Your Voice, Your Impact

https://www.citizen.health/ai-advocate/nkh-crusaders

06/08/2026

🐝 Ready to Bee Involved?

NKH Crusaders is powered by people who believe that families affected by NKH deserve hope, support, and progress. On June 15, we're inviting our community to learn how volunteers, advocates, and peer-to-peer fundraisers are helping move our mission forward.

Whether you have a few hours a month or simply want to learn more, we'd love to have you join us.

📅 June 15, 2026
⏰ 7:30 PM ET

Register today and discover how you can help create meaningful change for the NKH community.
https://nkhcrusaders.app.neoncrm.com/forms/volunteer-information-meeting