State advocacy days are one of the major highlights of local chapter advocacy programs. NHF Nevada's State Advocacy Day occurs in odd numbered years and includes volunteer representatives from the entire state of Nevada. Volunteer representatives include individuals with a bleeding disorder and/or their families members, community volunteers and other organizations. We come together to host a day at the state capitol. The event usually consists of a training session where we provide talking points and engage in role-playing activities. Training is followed by a day at the capitol where volunteers meet with their elected officials to educate them about hemophilia, von Willebrand disease and other related bleeding disorders. Constituents may visit representatives for various reasons, including to educate them, build relationships, thank them, and advocate for or against a piece of legislation.
State advocacy days give elected officials the opportunity to learn firsthand from affected individuals and families how expensive treating bleeding orders can be, and how important it is to have access to comprehensive care and continuity of care. Legislators learn how not having access to the proper treatment can be detrimental to the health of someone with a bleeding disorder, and potentially cost the state a lot of money in the long run.
Advocacy 101: Telling your Story
In preparation for our State Advocacy Days, join us to learn and practice Telling Your Story. If you've ever wanted to learn how to better communicate your Bleeding Disorders journey, this is the workshop for you! You'll learn about what should be included in your story, and get to practice with fellow members of the Nevada Bleeding Disorders Community.
The second workshop will take place on Tuesday, March 21st at 5:30 pm via Zoom. Register at: https://bit.ly/3TgC1wG
Save the Date for Carson City Advocacy Day - Monday, April 17th
Register for State Advocacy Day at: https://form.jotform.com/230746543292155
All members of the Nevada Bleeding Disorders Community are welcome to attend. The Nevada Chapter will be paying for transportation & hotel costs for up to 4 families from across the state to attend. Training & meals will be provided for all members of the community who attend. Families with members employed by a pharmaceutical manufacturer or a specialty pharmacy serving the bleeding disorders community are not eligible to receive assistance with transportation & hotel costs.
Deadline: In order to be considered for assistance, you must apply by March 27th, 2023. Registration for the event closes on 3/31. Registering early allows a better chance to meet with your representatives on 4/17.