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Wednesday, November 30, 2016

Calling all lung cancer patients/survivors and care partners! The science is finally moving faster, providing more treatment options and hope for the future. Now we also need to help shape what the future looks like in other ways. Here in Lung Cancer Awareness Month, please take a few minutes to register for the Cancer Experience Registry and fill out the questionnaire.

Over 221,200 people will be diagnosed with some form of lung cancer this year, one every 2 ½ minutes. Despite those numbers, people with lung cancer have remained a less visible and more silent community than those with other cancers. It’s time to be seen and heard!

Today, new treatments mean that more people are living with this disease, and that creates a larger group of survivors and a great need to speak up about the issues that impact the quality of your life. By joining the Cancer Experience Registry you join your story and your voice to those of other people who share your experience. We take what we learn from you and share it with the broader cancer community—with physicians, other health care providers, policy makers and funders. We use it to improve programs and services for patients and caregivers. We place your actual voices and experiences at the true center of everything we do.

We also understand that what you experience as a lung cancer patient or as a caregiver has some elements in common with what people facing other types of cancer experience—but it is also different. That’s why we created the special Lung Cancer program for the Cancer Experience Registry. This allows us to hone in on your emotional and social issues, the financial and other costs of your cancer care and the challenges of living with your disease.

While November is Lung Cancer Awareness Month, it is also the awareness month for stomach, pancreatic and carcinoid cancers. Similar to lung cancer, we have a specialized program for stomach cancer in our Cancer Experience Registry, and the registry overall is open to all people at any stage of their cancer experience, regardless of their cancer type. November is also Caregivers Month, and we are committed to examining the essential role caregivers play with a specialized caregivers program in the registry as well.

By joining the Cancer Experience Registry you not only help yourself, you also help others. You can register or learn more by going to www.cancerexperienceregistry.org. Take some time to explore the website. It just takes a few minutes to register, and about a half-hour to fill out the detailed questionnaire. You can set up a personalized page to share information, connect to others and become part of the community.

We also ask that you tell other people about the Registry. If you are part of a social media site, support group or other in-person or online community of people impacted by lung cancer, let them know about the Cancer Experience Registry.