Legislative Day

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 2024 LEGISLATIVE DAY PHOTOS

Legislative Day Breakfast

     

Rigo Garcia    

 

Legislative Day Awards

 

 

Legislative Day Office Meetings

 

2024 Legislative Day 

Registration Deadline has now passed.

Legislative Day 2025

What:

Protecting patient copay assistance is crucial this year, and we need your help! 

In 2025 we need your voice more than ever! Patient copay assistance is crucial for many families, and we need new laws to protect it! Will you join us?

On Legislative Day, individuals, families and allies of the bleeding disorders community all come together. Unite with us in Sacramento in 2025 to share your story about living with a bleeding disorder! Advocate on issues- such as protecting patient assistance programs- that are important to our community. You will have a chance to speak with Senators, Assemblymembers and their staff! Don’t miss out – we need your voice to make a difference!

When: 
Spring 2025- Dates TBD

Where:

  • Orientation & Training Webinar via Zoom in the evening
  • Future Leaders Alumni ReceptionSacramento (location TBD)
  • Legislative Day in person in Sacramento (subject to change based on public health & safety)
    • Legislative office visits – Capitol Annex Swing Space (1021 “O” Street)
    • Registration and meals  –  TBD

.  How:     

  • Pre-Legislative Day orientation and training webinar prepares you for your meetings with elected officials.
  • Registered participants will be assigned to geographically-aligned teams.  Each team will have a designated leader to coordinate the members during their Practice Session and on the meeting day.  
  • Future Leaders Alumni Reception Open to all former Future Leaders!  You will have the chance to reconnect with other former Future Leaders as well as meet our current year’s Future Leaders at this reception.  Enjoy some appetizers and beverages with other Future Leaders alumni the eve before Legislative Day!
  • Legislative Day includes several legislative visits with a legislator or staff. 

 

Español

¡Acompáñenos en Sacramento para la Visita a la Legislatura de 2025!

Este evento importante de defensa brinda una oportunidad para que las personas, las familias y los defensores de la comunidad de desórdenes sanguíneos se reúnan y compartan una voz unida. Los asistentes aprenderán sobre los problemas clave que afectan a las personas con desórdenes sanguíneos.
  • Una presentación web con traducción al ESPAÑOL y la oportunidad de hacer preguntas en vivo [la fecha por determinar]
  • Todos se juntarán EN SACRAMENTO [la fecha por determinar] 
Especialmente para las personas de habla hispana:  Formarán un grupo para reunirse con los senadores, asambleístas y su personal de habla hispana. Durante estas reuniones, usted puede brindarles información sobre los desórdenes sanguíneos y los problemas que enfrenta la comunidad.

Cuándo: Seminario web preparatorio
Visitas legislativas con senadores y asambleístas clave, o su personal

El desayuno y el almuerzo incluidos

Dónde: Las reuniones se llevan a cabo en Capitol Annex Swing Space (1021 “O” Street, Sacramento). Habrá mucha caminata, así que use zapatos cómodos para caminar. Ubicación del desayuno es por determinar.

¡Este es un momento crucial para abogar por la protección de los programas de ayuda al paciente, como la asistencia con copagos! ¡Necesitamos su voz!

 

La fecha límite para registrarse ya ha pasado. 

Para más información, comuníquese con Andrea en info@hemophiliaca.org.

Legislative Day Sponsors

NBDF would like to thank our 2024 sponsors – BioMarin, CSL Behring, Genentech, Sanofi, the Hemophilia Alliance, Pfizer, and Takeda for their support of the SBAC prgoram, and the program’s founding sponsor Novo Nordisk.

HCC thanks the Colburn-Keenan Foundation, Inc. for the Family, Fun and Connections grant in support of our Future Leaders’ Alumni Network Reception.