Know-How Exchange : Branding

Based on feedback we received from Know-How Exchange moderators, we’re posting this new and improved request for branding. We are a patient organization called Angioma Alliance for a disease called cerebral cavernous angiomas (www.angioma.org). This disease creates abnormal blood vessels in the brain that hemorrhage and grow causing neurological deficits and seizures.

As part of our services, we run a DNA/Tissue Bank, clinical database, and patient registry. We collect blood samples and surgically removed cavernous angioma tissue as well as medical history information from people who are affected by the illness. These samples and the accompanying information are stored until they are needed by researchers anywhere in the world. Affected individuals who don’t qualify for the DNA/Tissue Bank are offered the opportunity to become part of our patient registry. We collect contact information and some basic demographics for these folks. We will contact registrants and alert them of opportunities to participate in future clinical drug trials. You can think of this as a bank, but also as a conduit or bridge between the patient and researcher communities.

The impact is huge: we provide a resource for researchers at little or no cost to them. We are helping to move knowledge about the disease forward at a much faster pace with the eventual goal of finding a cure.
Imagine this scenario: you were diagnosed with a cavernous angioma a few weeks ago, and you are in the nurse coordinator’s office of your brain surgeon. You had never heard of the illness before your diagnosis and likely are freaked out about the brain surgery you are about to have. The nurse hands you a brochure about our organization and the DNA/Tissue Bank and encourages you to visit our website to get more information. You get home, are convinced that you want to add a positive component to this awful situation and enroll in the research project.

To make this scenario happen, our organization needs to do several things that we believe would be made much easier with branding:

1) We need to convince the physician’s office that our project is important and reputable enough to promote. Patient organizations do not have the inherent legitimacy of an institution like Harvard Medical School and so our literature needs to convey that our work is vital and that we do it well. Currently, we have a brochure that explains the DNA/Tissue Bank to physicians, but they are bombarded with so much literature that we need to find a quick, appealing way to gain recognition. An example from another disease is a project called ARUBA –this acronym raises curiosity and is much easier to remember than the cumbersome “A randomized trial of unruptured brain AVM’s.” Currently, to get our message out, we meet one-on-one with physicians when they stop by our booth at medical conventions. We are also known as a support organization throughout the neurosurgical and neurologist communities, but our research arm is less known. In the future, we may be advertising in medical journals and may be using direct mail to reach this constituency.

2) We need to interest and motivate the patient who has just been bowled away by their diagnosis. In the midst of their personal trauma, to agree to participate, they must also think of the greater good and believe that participation is worth the potential hassles of paperwork and interviews. Currently, we have a brochure that describes the process to potential participants and we have information and an interest form on our website. Again, we are competing with everything else that is going on in their lives at that particular moment, so “Angioma Alliance DNA/Tissue Bank, Clinical Database, and Patient Registry” may not be something they can wrap themselves around. Participation in the DNA/Tissue Bank is empowering and should be a source of pride.

3) We need to appeal to potential funders. Our individual donors are people who have some relation to an affected person through blood or friendship, but who usually don’t understand the disease and the necessity of our work. They need to be quickly convinced that the ROI for their philanthropy is significant without their having to go through a bunch of medical or research mumbo-jumbo. We are competing with every other charitable organization that exists. We do not have a specific way to convey our message to this particular audience at this time with the exception of appeal letters and word of mouth.

We’re interested in hearing suggestions for branding our project. The branding needs to convey that, as the only tissue bank and the only conduit between patients and the greater research community, the Angioma Alliance DNA/Tissue Bank, clinical database, and patient registry is the most important thing happening in the search for a cure for this specific illness and that their (each of the 3 constituent’s) help is essential.