Ever want to tell your Members of Congress a thing or two… to give them a piece of your mind?

Register now and join fellow patients, family members and friends spending July 30 in Washington, DC as part of the first Aplastic Anemia & MDS International Capitol Hill Advocacy Day, educating your senators and representative, as well as their staff members, about aplastic anemia, MDS, and PNH. Your voice and presence on Capitol Hill makes a difference – and can result in needed congressional action.

All of us affected by bone marrow failure disease know too well how devastating a diagnosis of aplastic anemia, MDS, or PNH can be. Fortunately we also know how much progress has been made in treating these diseases over recent years. Many of the advancements are due to research conducted through the federal government's National Institutes of Health (NIH). Other advances are from pharmaceutical companies, several of which have been assisted by the federal government's Office of Orphan Products Development, a part of the Food and Drug Administration. In many ways, our government plays a significant role in the lives of people with bone marrow failure disease, and there is even more that the government can and should do. That is why it is so important to communicate with the three members of the U.S. Congress who serve you: your two U.S. senators and your U.S. representative.

One of the most effective ways to communicate with your members of Congress is to visit them in Washington, DC and to tell them what it is like to have bone marrow failure. On Wednesday, July 30, as part of its annual Patient and Family Conference (held only a few miles from Capitol Hill), the Aplastic Anemia & MDS International Foundation is holding a Capitol Hill Advocacy Day to educate Members of Congress and their staff members about aplastic anemia, MDS, and PNH. You can tell them how important more funding for bone marrow failure disease research is, especially with the new Department of Defense program. Your participation can make a big difference to our cause—and it is easy to do.

The AA&MDSIF will assist with all of the logistics associated with your visits, and prepare you and provide you with everything you will need to have a successful meeting. Prior to your visit, we will arrange your meetings with your representative and senators, and invite you to a training session via a free conference call. On the afternoon of July 29th as part of the Patient and Family Conference, we will provide an in-person briefing and training session so you'll know what to expect, to say and to do. Foundation staff will also accompany you to the Hill. In short, we will make you feel comfortable being an advocate for our cause. Anyone can participate—patients, family members, caregivers, friends, and health care professionals—and you do not need to participate in the conference to participate on Capitol Hill Advocacy Day.

If you want to join us on Capitol Hill, please register and tell us a bit more about yourself. If you are also attending the Patient and Family Conference, be sure to send in your conference registration form.  Thank you very much, and we look forward to seeing you on July 30!