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Home | Program | Childhood Rare Disease Advocacy

Childhood Rare Disease Advocacy

Making Hope Possible Through Advocacy

Every child with a rare disease deserves a chance at treatment, care, and hope. The challenges these children and families face are significant :

  • Over 7,000 rare diseases identified.
  • More than 3,500 rare diseases that affect children.
  • Less than half of these diseases have any type of foundation support.
  • 30% of children with rare genetic conditions won't see their 5th birthday, yet 5 years is the average time to receive an accurate diagnosis.
  • 95% of rare diseases lack approved treatments.
  • 55% of families face uncovered medical expenses.
  • 80% of rare diseases have a genetic origin.

Families often face significant psychological distress due to insufficient information, lack of treatments, and financial burdens.

This is why we advocate.  This is why we act.

Our Advocacy Impact 

Together, we can create change for children with rare diseases.

Every voice, every action, every moment of awareness brings us closer to better treatments and brighter futures.

Legislative Action

We actively engage with legislative representatives to champion the needs of children with rare diseases.

  • Our advocacy efforts focus on:
  • Promoting research funding
  • Supporting treatment development
  • Improving access to care
  • Addressing insurance coverage gaps
  • Enhancing quality of life for affected families

Click here to view some of our advocacy efforts (blog category)

Community Awareness

We believe change starts in our community. Our signature awareness programs include:

  • Educational outreach programs
  • Media awareness campaigns
  • Community partnership initiatives

Our Advocacy Network

We participate in key rare disease advocacy events and conferences:

  • Rare Disease Legislative Conference
  • National Organization for Rare Diseases Summit
  • Global Genes Rare Patient Advocacy Summit
  • WORLD Symposium

Community Partnerships

We strengthen our impact through local partnerships:

  • Cure 4 the Kids
  • Ronald McDonald House of Greater Las Vegas
  • Make a Wish of Southern Nevada
  • Local healthcare providers
  • Educational institutions
  • Media partners

Learn More About Rare Diseases

For additional information about rare diseases and national advocacy efforts, visit:

  • Global Genes (globalgenes.org)
  • National Organization for Rare Diseases (rarediseases.org)
  • EveryLife Foundation for Rare Diseases (everylifefoundation.org)