You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of… Continue reading Getting “Patients Included” right Part II: Planning a patient-centric event
Tag: caregivers
Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea… Continue reading Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
Honoring Family Caregivers Everywhere
Is there a caregiver in your family? For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness? November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the… Continue reading Honoring Family Caregivers Everywhere
Giving Caregivers the Recognition They Deserve
“The true strength of the American family finds its roots in an unwavering commitment to care for one another.” – President Barack Obama November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.” There are more than 65 million family caregivers in the US who day in and day… Continue reading Giving Caregivers the Recognition They Deserve
Do You Know Someone with Dementia?
Today, September 21st, is World Alzheimer’s Day. For this annual event, Alzheimer’s associations around the globe are coming together to raise awareness about Alzheimer’s disease, which affects an estimated 36 million people worldwide. This degenerative brain syndrome impacts memory, thinking, behavior and emotion. Eventually, those affected require assistance with all aspects of daily life. The… Continue reading Do You Know Someone with Dementia?
Calling All Families Affected by Autism
Back in April, we wrote a blog post observing Autism Awareness Month. At that time, we had just over 100 members with an autism spectrum disorder (ASD). Now, just two months later, we’re pleased to report that our ASD membership has more than tripled with over 350 members reporting ASD and nearly 100 reporting Asperger’s… Continue reading Calling All Families Affected by Autism