I know, I know......using the term "rare" when talking about inflammatory breast cancer (IBC) often raises the blood pressure of some.  People fear that by using the term "rare" people will ignore IBC and assume it can't happen to them.  Even worse, the medical professionals will fail to diagnose the disease because they don't expect to ever see a case.

While all of the above can be true there are some advantages to being classified as a "rare" disease.  Did you know that approximately 30 million Americans are living with a rare disease?  A rare (or orphan) disease is "generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States." [Office of Rare Disease Research]  You'll find information on IBC on the ORDR website.  Advantages of this "rare" classification are the incentives offered for the "development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare disease or conditions." [FDA Office of Orphan Products Development (OOPD)]  Individuals and companies in drug development can take advantage of these incentives.  "The Orphan Drug Designation program provides orphan status to drugs and biologics which are defined as those intended for the safe and effective treatment, diagnosis or prevention of rare disease/disorders that affect fewer than 200,000 people in the U.S., or that affect more than 200,000 persons but are not expected to recover the costs of developing and marketing a treatment drug."  The OOPD administers two extramural grants programs to facilitate this research, one specific to pediatric needs.  Too often pharmaceutical companies are hesitant to develop drugs for smaller, subset populations of patients due to the tremendous research, development, and marketing of new products.  The incentives offered by OOPD have the potential to encourage development of compounds designed specifically for a disease like IBC.

Perhaps Rare Disease Day can give those of us in the IBC community a platform, apart from the usual 'Pinktober', to raise awareness in our home communities and states.  A press kit is available on the Rare Disease Day website.  This information could be used to help us get our stories in the local media and use Rare Disease Day to help educate people about IBC.  It is important for people to realize how unique and different IBC is from other breast cancers and raising awareness outside the month of October just might be the perfect window of opportunity.

When the Inflammatory Breast Cancer Research Foundation (ibcRF) began exploring the development of the BioBank we were directed to Genetic Alliance, a coalition of over 600 rare disease advocacy groups.  ibcRF became the first cancer organization to join Genetic Alliance.  Through this organization ibcRF has been able to learn more about the rare disease community and how to leverage that "rare" label when possible.  Through Genetic Alliance, ibcRF will have a presence at the National Institutes of Health celebration later this month.  The recent Sanofi U.S. Collaborate/Activate Challenge award, described in last month's newsletter, focuses on the collaborative work of Genetic Alliance, ibcRF, and two other advocacy organizations in developing a comprehensive on-line registry of patient disease experience.  Encouraging patients to take responsibility for their own health and helping them connect with advocacy organizations will impact the lives of all those dealing with rare and chronic diseases.

Take a look at the Rare Disease Day website and consider if there are ways that you can use Rare Disease Day to increase awareness of IBC.  Raise your voice and let people know, "you don't have to have a lump to have breast cancer!!"

**February 28 and March 1, 2013 have been designated Rare Disease Day by the National Institutes of Health.  A celebration will be held in the Natcher Auditorium at NIH from 8:30 am to 4:00 pm on Friday, March 1.  Attendance is free and open to the public.  

Just after the holidays I received a phone call from my friend Jerry, the pewtersmith responsible for our delightful, hand-cast pewter angel from 2006, pictured here.  He was calling to give an update on the status of the next Inflammatory Breast Cancer Research Foundation angel.  As you may remember, some time ago an article appeared in this newsletter inviting your children, grandchildren, nieces, nephews, and other children closely connected to the inflammatory breast cancer (IBC) community to send in black and white drawings of angels.  The response wasn't exactly overwhelming but the submitted package of drawings was forwarded to Jerry.

When we talked, Jerry said that while there were some "budding artists" represented in the drawings, he didn't think any of the drawings would translate well into a form that could be cast in pewter.  Adapting a drawing into a form that can be cast is challenging.  He is anxious to keep moving with this project and ask that we send out another plea for "more angel drawings, hundreds of them if you can get them!"

Jerry particularly likes working from children's drawings, especially those in the 4-8 yr old age group.  He says that age group tends to let their imagination run free and their creativity is evident in their drawings.  As we age we are more influenced by conventional art around us in the form of greeting cards and such, so we lose that whimsical world view in our art.  Jerry cast some delightful angels based on his son's drawings, back when his son was a young child.

So.....if there is to be a second edition of the Inflammatory Breast Cancer Research Angel we need "hundreds of angel drawings"!!   Surely we've got some creative genius' just waiting to be discovered!  Get out those pencils and papers and start drawing!  Can't wait to see those creative angels!!

[on the back of each drawing please put the child's name, age, and contact information:  send to P. O. Box 2805, West Lafayette, IN  47996]