Hemophilia Foundation of Illinois - HFI
The Hemophilia Foundation of Illinois is the only social service organization in the state of Illinois which offers programs and services for children and adults with hemophilia and other inherited bleeding disorders. In Illinois inherited bleeding disorders affect 260 thousand people, while only 10 percent of those diagnosed receive treatment.
We were founded in 1949 by a group of concerned parents who were tired of having no possible treatments for their sons with hemophilia. Thankfully since then effective medicines have been developed allowing people to live strong productive lives. This vision and drive to provide options for people with these chronic disorders remains paramount to our efforts today. Treatments today are safe and effective.
It is our purpose now to make sure that people are diagnosed early and properly and that they have the educational tools to insure that they know how to effectively manage their conditions. These disorders are very expensive and this is another critical part of our mission. We work with government and private insurers to make sure there are public and private sources to cover the cost of treatment. We work each day to reach out to an ever-growing number of people who need our support.
What new functionality we are looking for
For the new website we would like to embrace the principles of web 2.0. In bringing that social experience into the site as well as the site being the greatest source of information for our current and prospective consumers.
We have over 60 years of history and a great archive of media that we would like to be able to share, that we current do not have the means to be able to do so.
Currently we lack a true central media center, where we can post our press releases, comments and statements, fact sheets and other important medical information about the products that our consumers use that is so crucial to these peoples livelihood.
Today, there is no website out there that has a complete compilation of product information for every bleeding disorder, we would like to build this, so that we are truly non-biased about products and sources of treatment for everyone.
We would like to have better social media integration into our site to broaden our presence on the web, to be able to reach people that have a bleeding disorder that are currently undiagnosed and not receiving care. We would also like to have a website that is optimized for better search engine optimization.
For our events, we would like for consumers to be able to go online to our website and to RSVP for free events, for donors and fundraiser attendees to be able to RSVP and to purchase their tickets to our events right on the website.
We would like the usage of Google Analytics to be able to monitor the traffic of our website and to take it to new heights.
We are visioning having a chat area, a forum as well as an interactive blog where consumers, staff, members of the board can converse and really go beyond the "brochure website" and build an online community.
This all goes back to supporting our community, we have a lot of consumers who may not be able to make it to our events because they have conflicts or live too far away... this website will allow us to be able to reconnect with these people and provide the same resources and community that we have been able to provide to people in Illinois for over 60 years.
How the new functionality will help
The Hemophilia Foundation of Illinois is in the process of changing our name and re-vamping our vision for the future. On September 1, 2011 we will become the Bleeding Disorders Alliance Illinois. This strategic re-direction will allow us to better serve people with a full-range of bleeding disorders - besides hemophilia. In addition, we are adding outreach to our core values of education, advocacy and consumer supports.
Currently our web site - developed by a team of volunteers in the early 2000's - is minimal at best. We are able to update this in-house - but when you are building on a something without a proper foundation it is impossible to be effective.
We want a site that is interactive and is actually a place for people with bleeding disorders to come to learn and interact. We want it to support education for all bleeding disorders while also allowing individuals and families a source for some level of socialization.
Critical also is to truly brand our organization and its strengths so that we can effectively fundraise. It is no longer acceptable to just have a donate here button. We are capturing all of our events with digital photography and video. Currently, it is virtually impossible, to upload this tremendous means to tell our story to our web site.
Finally, we have made some baby steps into social media with some small successes in this arena. For example, we hosted a first-time walk event last year and through social media were able to get out over 500 walkers who raised in excess of $100,000 for our cause - a lot of money for us! We must have a new site that integrates a full variety of social media tools for us to move forward.
How our organization will use the technology
Who will use the technology