Make NF1 & Rare Conditions Specialists and Support Services Available in Nevada Hospitals

Make NF1 & Rare Conditions Specialists and Support Services Available in Nevada Hospitals
Top supporter voices
Why this petition matters
Our one-year-old daughter, Caliyah, has Neurofibromatosis Type 1 (NF1), a rare genetic condition that causes tumors to grow on nerves throughout the body. Like so many other families in Nevada facing NF1 and other rare conditions, we are forced to travel out of state to access specialized medical care. This creates an enormous financial and emotional burden, as well as unnecessary stress for families like ours.
Currently, Nevada lacks specialists trained to diagnose, treat, and manage NF1 and similar rare conditions. The absence of NF1 experts in our state means children like Caliyah, who are already fighting uphill battles, are left without accessible, local care. This is unacceptable.
We are calling on Nevada legislators to act now:
1) Mandate Nevada Hospitals to Employ NF1 Specialists: Nevada hospitals must be required to employ specialists trained in the care of patients with NF1 and other rare genetic disorders. Having dedicated experts locally will ensure timely diagnosis, treatment, and support for families without needing to cross state lines.
2) Require Hospitals to Provide Access to Rare Disease Specialists:
This mandate should extend to include all rare conditions to ensure that Nevada families can receive appropriate care in their own communities.
3) Establish Supportive Organizations for Families with Rare Diseases:
Families need organizations and resources to assist with the financial, emotional, and logistical challenges that accompany rare conditions. This includes financial aid, peer support groups, and advocacy organizations available in Nevada.
4) Amend Laws to Support Rare Disease Families: We urge Nevada legislators to amend existing healthcare laws or create new ones that ensure hospitals provide these critical resources and specialists to families affected by NF1 and other rare diseases.
Our children deserve better. No family should have to leave their state to seek basic healthcare for their child. With your support, we can make this change happen and bring desperately needed NF1 and rare disease resources to Nevada.
Please sign this petition to demand that Nevada lawmakers prioritize the health and well-being of children like Caliyah. Together, we can ensure every family has access to the care they need—right here in Nevada.
CTA (Call-to-Action):
Sign and share this petition to show your support for families battling NF1 and other rare diseases. Together, we can bring NF1 specialists and critical resources to Nevada.
Decision Makers
- Angela TaylorNevada State Assembly - District 27
Make your petition known to Angela Taylor
- Richard DalyNevada State Senate - District 13
Make your petition known to Richard Daly
- Natha AndersonNevada State Assembly - District 30