RareCancerLyfe

Short post today. I want to tell you about a new website called RareCancerLyfe.

RareCancerLyfe is an online community for patients with rare cancers. There are a few definitions out there for what makes a cancer "rare," but Follicular Lymphoma is indeed considered a rare cancer. According to the National Cancer Institute, a "rare cancer" is one that has fewer than 40,000 new cases each year. FL has about 15,000 to 20,000 each year. 

Sometimes it's hard to think about FL as "rare," especially if you're like me, and read and think about it every day. But all subtypes of Non-Hodgkins Lymphoma make up just 4.3% of all cancers in the United States, and FL make up only a third or so of NHL cases. So comparing it is rare.

Why is that significant? Well, in terms of patients, it means it's less likely that, as a patient or caregiver, you know someone who has had FL (unless you're part of an online community). And that means fewer chances to connect with others.

So RareCancerLyfe is trying to respond to that, providing a space for patients with all kinds of rare cancers. Because even if one person on the site has FL, and another has Ewing Sarcoma, and another has Glioblastoma, we all have many things in common. We all know what it means to have cancer, and all of the baggage that comes with it. This is a nice place to connect with others.

My own interest in the site comes from my being an Ambassador for Lyfebulb, another site that focuses on patients of all kinds with chronic disease (and yes, FL is a considered a chronic disease, something that most of us will live with for a very long time). As an Ambassador, I let people know about the good things that Lyfebulb and its affiliates are doing.

And I do think RareCancerLyfe will do some good things. I encourage you to take a look. Click around at some of the Active Discussions and see what people are saying (you might even find a few responses from me). Add to the conversation if you have something to say -- you might be amazed at how often people were waiting to hear a story like yours.