Cutaneous Lymphoma Foundation
Did you know that there are 7,000 rare diseases? Many of these rare diseases have so few patients that a formal patient advocacy organization is not feasible. However, the cutaneous lymphoma patients have the Cutaneous Lymphoma Foundation (CLF) to help them.
Cutaneous lymphoma is an umbrella term that covers a variety of rare lymphomas that occur in the skin. Because the disease mimics other skin disorders like psoriasis or eczema, many patients go undiagnosed or misdiagnosed for years. It is estimated that it takes the average patient 5-7 years before they get a definitive diagnosis of cutaneous lymphoma. This is due to many factors, one being that under the microscope, the disease masquerades as more common skin disorders. For most patients, it is a chronic, lifelong disease that can be managed with the help of a knowledgeable clinician. The good news is that there are a variety of treatments available for patients, both skin directed therapies as well as systemic therapies that are effective in keeping the disease under control.
CLF Shares a Best Practice
It would be impossible to support patients from around the world and deliver accurate information without having a good internal technology infrastructure. Over the last year, we embarked on purchasing and implementing a new database.
We have had our challenges along the way, but share some of the lessons we have learned;
- Be willing to invest the time and money necessary to procure the right technology infrastructure. You may not need all the bells and whistles or the high-end system. Sometimes the simpler systems are better.
- Be clear about how your plan to use the technology, in the short-term and long-term.
- Establish a system administrator. This is someone who enjoys working with the technology and has a passion to learn the system.
- Give yourself enough time to do the work needed for the implementation. This requires time to plan and review your workflow, then to test and review how it is working, making changes as necessary.
- Know that the system will never be “perfect”, that there will be challenges and the implementation is never really done as there are always new ways to use the system once everyone becomes comfortable with it.
- Plan to evaluate how the system is working. Are you getting the most out of your investment? Is it still meeting your needs?
Results So Far:
- We have streamlined our workflow and automated many of the functions.
- Captured donation data in a consistent manner that can be reported on. This has been key for us to understand who our donors are, how to put together strategies for fundraising in a structured fashion and allows for evaluation of those strategies. It’s still a work in progress, but we have come a long way from sorting through spreadsheets and lists.
- Created more professional communication templates that support the look and feel of the organization helping us solidify our brand with our constituents.
- Alleviated much of manual data entry as all of the applications are integrated with the core database. This results in clean, accurate data and also allows us to add more detailed data about our constituents.
- And most importantly, it has allowed us to launch our first research award program effectively by using the templates for outreach communications and creation of easy tracking of the award applications.
With a staff of four and a large volume of programs and services, incorporating technology is key to doing more with the team. We are happy to share our experience with those who are interested.
From left to right: Dr. Owen O'Connor, Karen Van Rassel, LC, and Susan Thornton, CFL.
This photo was taken at the 2013 T-cell Forum, San Francisco, USA.