Welcome to NRF24.ORG Family Support

Dear Families,

We want you to know that you are not alone. Here at NRF24, we understand the unique challenges that come with caring for a child with an ultra-rare condition. Our mission is to support you every step of the way—through research, resources, and community.

Whether you're searching for answers, looking for support, or simply need someone who understands, we're here for you. Together, we can face the challenges ahead, one step at a time.

You are not alone—we’re here to help.

With warmest regards,
The NRF24 Team

JDVS / Cyclic Vomiting Syndrome (CVS)

A group for families affected by JDVS and Cyclic Vomiting Syndrome, characterized by recurrent episodes of severe nausea and vomiting.

  • Identifying triggers and managing symptoms
  • Treatment options and dietary recommendations
  • Sharing personal experiences and coping strategies

JDVS / Behavioral Issues

Focused on behavioral challenges associated with JDVS, providing support for managing and understanding these issues.

  • Behavior management techniques
  • Therapy and intervention strategies
  • Educational resources and support services

Neurodevelopmental Disorders

For families dealing with disorders that affect the development of the nervous system, leading to abnormal brain function.

  • Early intervention programs
  • Cognitive and motor skill development
  • Accessing educational accommodations

Genetic Epilepsies

A support group for those affected by epilepsy linked to genetic factors.

  • Seizure management and safety
  • Medication and treatment plans
  • Lifestyle adjustments and support networks

Autism Spectrum Disorders (ASD)

Connecting families navigating ASD with a focus on neurogenomic influences.

  • Social skills and communication therapies
  • Navigating educational systems
  • Sharing success stories and milestones

Rare Genetic Conditions

A space for discussing less common neurogenomic conditions affecting children.

  • Genetic testing and counseling
  • Finding specialists and clinical trials
  • Emotional support and advocacy

Attention Deficit Hyperactivity Disorder (ADHD)

For sharing experiences and strategies related to ADHD in the context of neurogenomic factors.

  • Behavioral therapies and management
  • Educational support and resources
  • Parenting strategies and support

Mental Health and Emotional Well-being

Addressing the psychological impact on children and families dealing with neurogenomic disorders.

  • Coping mechanisms for stress and anxiety
  • Family counseling and support groups
  • Building resilience and positive mental health practices

How to Join a Support Group

Select a Group: Choose the support group that best fits your family's needs.

Create an Account: Sign up on NRF24.ORG to participate in forums and access exclusive resources.

Engage: Share your story, ask questions, and connect with other families.

Contribute: Offer support and advice based on your experiences to help others in the community.

Additional Resources

By creating these support groups, NRF24.ORG aims to empower families through shared knowledge and collective strength. Together, we can navigate the challenges of neurogenomic disorders and celebrate the victories along the way.

THANK YOU FOR YOUR SUPPORT!