On the federal level, NHF’s annual Washington Days provides an opportunity for the community to come together to discuss key issues impacting access to care, learn about advocacy, meet with elected officials, and put a face on bleeding disorders. We continually monitor issues on the federal level and update our advocacy priorities as issues arise, such as ensuring funding for federal hemophilia programs and research. Food and Drug Administration (FDA) related issues including blood and blood product safety, and protecting access to affordable, quality care and treatment.
Due to COVID-19, the 2021 Washington Days will be held virtually on March 1-5, 2021.
If you are a family, teen, or individual and want to have a chance to share your story, please reach out to the Chapter office before December 1, 2020 to see how you can attend future events. Call 208.344.4476 or email: firstname.lastname@example.org.
This year, NHF Idaho was excited to send 7 members from Idaho to Washington, D.C. to have the opportunity to speak with our House and Senate Representatives from Idaho.
Here is what the Shaw Family had to say about their experience.
The Shaw family was really grateful for this experience- they were able to advocate and take in some museums and monuments. Reflecting on the experience, both Whitney and Ashley identified that this was a valuable experience in advocacy but also in showing the legislative staff how hemophilia impacts the entire family, not just the affected person. Carter appreciated the ability to tell his story directly to the team that can make a difference. Carter also showed great love as he shared his coat with someone less fortunate he met while touring the monuments. Kymm added while reflecting, that she realized the importance of advocacy- every story, every voice is important and should be heard! Milo was proud to be able to educate the government staff on the bleeding disorder and provide real-life situations where decisions made could impact our community drastically.