Executive Corner

Dear HFA Members,

The political landscape has never been more polarized than it is today, with little room for common ground, compromise, or respectful dialogue. However, HFA’s recent Symposium in San Diego proved that this is still possible and amazing things can happen when members of this community come together as a group with a shared message. 

San Diego was my third Symposium since joining HFA and despite any internal or external challenges, there was something in the air that made this year’s meeting feel different.

This is something positive that I have never experienced at any other annual meeting during my 27 years working in associations.  

Outside of Symposium, HFA and the broader bleeding disorder and rare disease communities face challenges due to proposed changes to Medicaid, the insurance marketplace, and reductions in the Federal workforce. The pace of change can be dizzying but the HFA policy and advocacy team are on the forefront watching out for every member of the community and has taken a lead role in coordinating efforts with NBDF, the Hemophilia Alliance, and other bleeding disorder organizations in coordinating messaging and activating the community to ensure our message is heard by lawmakers. 

As was the case with Symposium, this is a time for all of us to speak with one voice and support not only HFA, but the broader bleeding disorder and rare disease community. The HFA advocate network will ensure you receive all the information regarding our efforts and provide ample opportunities for you to reply to emails and send a message to your legislator regarding a given issue or position. Here is an opportunity to join our network and sign-up online. 

Oftentimes, this only requires one minute of your time and can make a huge difference when we have thousands of voices shouting to be heard. 

Whenever I enter the HFA office in Washington, DC, I view the picture of early HFA community members standing on the steps of the Capitol with signs asking Congress to pass the Ricky Ray act. This picture is a regular reminder of why HFA was created and what can happen when a community comes together with a shared voice.  

Behind the scenes we are continually working to improve our offerings to the community and being your voice. As mentioned during Symposium, HFA has worked with the Institute for the future to examine current trends and signals of change so we can take steps today to be there for you in the future. As part of these ongoing efforts, you will be asked for your voices to be heard. Please do not hesitate to speak up as we want to hear from you and share your concerns with legislators or offer education and resources that you need today to be successful in the future. The HFA staff and Board are working together to assure HFA remains a valued community resource and fulfills our mission and vision of allowing people with bleeding disorders to thrive. 

Respectfully,

Dan Kelsey

CEO, Hemophilia Federation of America