Welcome to Issue 1!
Patients Rising believes that in our world of advocacy, nothing speaks more loudly – or more clearly – than the authentic patient voice. That is why each week we will make sure that it is presented in its finest form: the words and wisdom written and created by patients for patients.
If you have ever felt that a doctor wasn’t able to give you the full attention your condition deserves, you aren’t alone. Doctor-patient communication is a common problem. This week Emily Levy writes about the importance of forming a partnership with your doctor.
We meet Ann who is living with the ultra-rare disease, Stiff Person Syndrome (SPS). Since there is no official treatment for SPS, she struggles to get anything covered by insurance since everything is labeled "experimental."
Also, check out our webinar archive featuring Taking Advantage of Clinical Trials, Navigating the Costs of Cancer, and Managing a Chronic Illness: a Guide to Organizing Your Care.
In our Good Reads section, we join KCCure in applauding the approval of new combination therapy for advanced kidney cancer.
There is simply no substitute for the insight and ideas of the patient experience, and there is no limit to the ways it can make a true and lasting difference in the lives of others. In our Created By Patients section, you'll meet gastroparesis patient, Carolanne Monteleone who is creating handmade feeding tube accessories at Crafting for A Cure!
We choose to amplify these and many other patients voices as our organizations make the critical case that patients have a right to access the innovative therapies and personalized care they need and deserve. They also are living their lives and experiencing difficulties few take into consideration.
By continuing to raise their voices through our Voices of Value blog and #RisingTuesdays campaign on Instagram, we aim for better ways to help ensure that the right patient receives the right treatment at the right time.
Keep Rising --
-- Terry
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