On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands… Continue reading #ChatActChange: empowered to chat, act and make change – together
Tag: advocacy
PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes
CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes. PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement… Continue reading PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes
Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended… Continue reading Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF
What do you know about brain injuries?
The Brain Injury Association of America (BIAA) explains it simply – a brain injury can happen anytime, anywhere, to anyone. That’s why March is Brain Injury Awareness Month. It’s time to learn more about traumatic injuries that can affect the brain and nervous system and share our experiences to increase awareness about everything from concussions… Continue reading What do you know about brain injuries?
PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS
FOR IMMEDIATE RELEASE Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and… Continue reading PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS