by Mason McNany, BDCC Future Leader Program alumnus
Participating in the HFA Regional Advocacy Training in Denver was an empowering experience that I am grateful to have taken part in. The training took place in the Westin-Denver International Airport, where advocates from various parts of the country joined efforts to learn more about advocacy in the bleeding disorders community. The training was arranged with the help of the Hemophilia Federation of America. Ray Riordan, HFA’s Advocacy Director, assisted in organizing the event for the weekend.
The key take away from this training is the role of community for people with a rare disease. It was very encouraging to meet people who either have a bleeding disorder, care for someone who is impacted by a bleeding disorder, or work in the community. I felt that I was not the only one experiencing these unique challenges. We were provided with many opportunities to get acquainted with other people and listen to their stories and experiences concerning their connections with bleeding disorders.
We gained new knowledge about advocacy fundamentals, the HFA Advocacy Network, storytelling and message development. In addition to the effect of the policy on the bleeding disorders community, we learned about effective communication with the lawmakers and how to stay involved in advocacy and leadership after the training. This information enhanced my understanding on how to become a successful advocate on the local and national level.
It was very inspiring to learn about the common aspects and differences between the representatives of urban and rural communities who live with hemophilia. Regardless of the location, the majority of participants had many similar worries related to access to medication, insurance coverage, treatment, and health care. On the other hand, some of us, those living in rural communities, also faced some specific difficulties in accessing treatment, such as distance from the facilities, fewer specialists, and transportation problems. I learned how significant it was for the advocacy to cover all the members of the bleeding disorders community. In general, the HFA Regional Advocacy Training made me feel much more confident and empowered in my ability to defend myself and other people in the process of the struggles that come with bleeding disorders.
