DIPNECH.COM goes live!

I just heard from Jim out in California that he has launched a website: www.DIPNECH.com.

He's compiled some very good information, and eventually hopes to use the site to compile information about patients. This could be the beginning of forming a registry.

Please visit the site!

Facebook page

I decided it was time to enter the 21st century, and I've set up a Facebook page. Just search for "Dipnech" (Facebook won't let you use all caps for your page name), and say you "like" the page. If I get some followers I'll start posting stuff there.

A small ray of hope?

Thanks to my pulmonologist, I've just learned of a paper published in March in the American Journal of Respiratory and Critical Care Medicine entitled "Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia: A Systematic Overview." To be frank, there's nothing much new in this paper. But what is of interest is that the authors, a group at the Mayo Clinic in Arizona, propose the establishment of a national registry for patients diagnosed with DIPNECH to enable further study with the ultimate goal of establishing treatment guidelines.

The senior author is Farouk Mookadam, MD, MSc of the Department of Medicine. His e-mail address for correspondence and reprints is mookadam.farouk@mayo.edu.

Let's all write and encourage him to work on establishing this registry!