We have begun our end of year fundraiser. Our goal is to raise $2000 by November 30. Please help us out by making a donation. There are several ways you can donate. You can donate on our site by clicking on the Donate link on our home page. You can visit our Causes page on Facebook, or you can give through the Razoo link on the right hand column of our home page.
Here are some of the things we have done this past year and some things we will be working on this coming year:
- Partnered with the Iron Disorders Institute in promoting, mailing, and collecting data for the 2010 National Hemochromatosis Patient Survey. This was a combined effort with the US Centers for Disease Control & Prevention, (CDC) The Medical University of South Carolina (MUSC) and The Iron Disorders Institute (IDI). There were 949 completed surveys, many of which were people that we contacted.
- Update of our website. This thing is really nice! www.hemoinfo.org. Special thanks to Bo Bartlett and Lee Owens for their help. The website is also much easier to update with new content.
- Google AdWords is back up and running. We started running our ad on August 30 and since then we have had 653 clicks and 26,972 impressions. The purpose of the ad is to increase awareness of hemochromatosis and drive people to our website so that they can get information they need.
- Creation of our national patient database. We have created a national patient database where people can register to provide their contact information. This will be important as we move forward with the patient survey we are developing.
- Patient Survey. This is very exciting! We are working with a PhD student at the University of Texas at Dallas to develop a patient survey. The purpose of the survey is to determine the level of access that hemochromatosis patients have to treatment and to determine how much they are paying for the services they are receiving. We also want to know how many patients are paying for services out-of-pocket versus those who are paying with insurance. One of the challenges that patients with hemochromatosis face is finding a facility that will perform therapeutic phlebotomy treatment. We suspect that oftentimes patients receive treatment at facilities that do not accept insurance and therefore must pay for services out-of-pocket. If that is true, we may need to focus resources on policy initiatives to encourage those facilities to accept insurance payments.
- Advocacy. We sent letters to various members of the House and Senate to advocate for funding for programs like the CDC and NIH. We also sent a letter to the FDA regarding some proposed guidance that they had regarding regulatory requirements applicable to manufacturers of in vitro diagnostic products intended for Research Use Only (RUO) or Investigative Use Only (IUO). We suspect that these regulations would have a negative impact on the ability of hospitals and clinical laboratories that use these products for clinical diagnosis of hemochromatosis.
Please help us continue to help others by making a donation today!