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.
2020 Washington Days was held February 26-29, 2020, at the Hyatt Regency Washington on Capitol Hill.
2021 Washington Days will be held on March 3-5, 2021
This year, NHF Idaho was excited to send 7 members from Idaho to Washington to have the opportunity to speak with our Representatives. We were pleased to have the opportunity to send our first Family to Washington to have the experience of what it is like to share their story and take a stand on what it is like to live with a bleeding disorder.
Here is what The Shaw Family had to say about going to Washington
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.
If you are a family, teen, or single 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 come.