Have you ever noticed a sudden cough come on that doesn’t seem to want to go away? Or felt strong during exercise one day, then found yourself getting short of breath over the next few weeks? Maybe you notice it’s getting a little harder to breath as the years go on. Chronic cough, shortness of… Continue reading How is Alpha-1 Different from Chronic Obstructive Pulmonary Disease?
Tag: Rare diseases
Getting to know our Team of Advisors – Steve
A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being… Continue reading Getting to know our Team of Advisors – Steve
Getting to know our Team of Advisors – Amy
We’re been introducing the PatientsLikeMe Team of Advisors on the blog over the past 6 months, and today, we’re happy to announce Amy, a member living with a rare genetic disease called Fabry. Below, she shares about the importance of being aware of patients as individuals, and how she’s learned to live (and thrive!) with… Continue reading Getting to know our Team of Advisors – Amy
PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit. Ben was on a… Continue reading PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
Recognizing the Rare Disease Community’s Champions of Hope
Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect… Continue reading Recognizing the Rare Disease Community’s Champions of Hope
Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology. Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC. A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa,… Continue reading Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King
Recognizing Multiple System Atrophy (MSA Parkinson)
In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US). Today we’d like to spotlight one of these lesser-known conditions: multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and… Continue reading Recognizing Multiple System Atrophy (MSA Parkinson)
Rare Disease Day: Together, We Can Do More
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a… Continue reading Rare Disease Day: Together, We Can Do More