I’m the parent of a hemophiliac and I’d like to become more involved in advocacy work to support my child and the bleeding disorders community at-large. Does HFA have any advocacy programming available for parents?
Yes! HFA recently announced the creation of a new Advocacy Leadership Council. The ALC program is designed to build a strong, engaged army of champions to fight for meaningful healthcare and thus help to improve care and quality of life for all people living with bleeding disorders.
The ALC will be comprised of 12 to 15 adults with bleeding disorders and/or parents of children with bleeding disorders. Council members will receive robust, year-round advocacy training and commit to using their experience to educate, organize, engage, and mobilize the community. The ALC will meet face-to-face three times in 2019 and participate in webinars and local civic engagement activities. Members will build the skills and expertise needed to assist in advancing policies that help the bleeding disorders community, as well as become a resource for advocacy efforts at the local level.
Visit HFA’s website for more information on the ALC and to access the application. The application deadline is Jan. 25, 2019 so be sure to apply soon!
If the ALC isn’t an option that works well for you this year, please note that HFA also hosts many other events throughout the year featuring sessions on personal and political advocacy, including our annual Symposium. Find a list of local and national programming here.
Have a question? Click HERE. Your name will be changed in the response.
HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance