Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it… Continue reading Uniting for hope on Rare Disease Day 2014
Category: Patient Experiences
Subjects no more: what happens when trial participants realize they hold the power in clinical trials?
When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day… Continue reading Subjects no more: what happens when trial participants realize they hold the power in clinical trials?
Give the gift of life on National Donor Day
Some of us might give our significant others and family members flowers and chocolates on Valentine’s Day, but did you know that February 14th is also National Donor Day? That’s right – in the spirit of love and giving, today is all about celebrating past donors and raising awareness for the five points of life:… Continue reading Give the gift of life on National Donor Day
“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and… Continue reading “MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness
Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe! Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women… Continue reading PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness
Living with hope – An interview on AKU with Alycia and Nate
We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom,… Continue reading Living with hope – An interview on AKU with Alycia and Nate
Social media users say ‘yes’ to sharing health data
There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to… Continue reading Social media users say ‘yes’ to sharing health data
Early – regularly – recommended: all for Cervical Health Awareness Month
If you follow our blog, you’ve probably noticed that we post a bunch about awareness months, weeks and days. It’s part of our mission to bring a bit more attention to what’s going on out there and how you can get involved. This will be our first awareness post for 2014, and it’s for National… Continue reading Early – regularly – recommended: all for Cervical Health Awareness Month
Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy
Murali Doraiswamy is a Professor of Psychiatry and Behavioral Sciences at Duke University where he is also a member of the Duke Institute for Brain Sciences. He also serves as an advisor to government agencies and businesses. Dr Doraiswamy is the brain health advisor for Men’s Health magazine and serves on the World Economic Forum’s… Continue reading Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy
A New Year with Jamie Heywood
http://www.youtube.com/watch?v=cfUTG7YnijE It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part… Continue reading A New Year with Jamie Heywood