Category: Patient Leader Guest Blog


Testicular Cancer Awareness: Tip for Self-Check

April is Testicular Cancer Awareness Month, and although we should be staying on top of our health year-round, it's a great time to spread the word about this disease. It's important to not only celebrate the survivors and also remember those who lost their bout with TC, but also spread awareness and educate those on…

Treatment Scores: The Future of Medicine

We know what patients need, but it sadly seems like no one cares. While the whole world of business, physicians, and programmers have been busy competing to create electronic health records, we have been working on figuring out the science behind medical treatments, because that’s what we care about. What the patient needs to know…

Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the people in the room with…

How to use Facebook groups as a patient community

When my husband and I created our website Diabetes Strong in 2015, one of our greatest challenges was to find a way to communicate directly with our community – outside of just comments on individual blog posts and our newsletter. A review of the existing diabetes forums and message boards revealed that most of them…

Rare Disease Day: Importance of Fundraising and Research

For some 30 million Americans living with a rare disease is part of everyday life. Many individuals suffering from a rare disease go to sleep and wake up with the same understanding and outlook of the disease as they did the day before, or even years before - there is no reprieve. In the United…

How Patient Advocates can make the most of Awareness Holidays

Raising awareness about a disease or health concern can be an excellent means to foster an appreciation for patients and families, encourage donations to research, or even education about preventative measures. Awareness holidays offer major opportunities to get the word out about a specific disease or overall community. Patient advocates can take advantage of this…

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