Global Genes

Day-by-day, hand-in-hand

All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a rare disease. RDD’s international theme is “Living with a rare disease” because every patient’s story and needs are different, and only by sharing our experiences and raising awareness can we all hope to improve the lives of those living with a rare disease. It’s also about the million of parents, siblings, grandparents, aunts, uncles, cousins and friends that are impacted and who are living day-by-day, hand-in-hand with rare disease patients.1 Check out the official video below: According to the Global Genes Project, there are 350 million people living with a rare disease around the globe. Just how many is that? If you gathered those people into one country, it would be the third most-populous country in the world. There are more than 7,000 identified rare diseases, from skin conditions to progressive neurological disorders, and more are being discovered every day.2 Here’s how you can get …

Day-by-day, hand-in-hand Read More »

Uniting for hope on Rare Disease Day 2014

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 affects less than 200,000 people at any given time. Rare diseases affect almost 1 in 10 Americans, and many times, they cause common symptoms that can be mistaken for other conditions.1   All across the world, people are raising awareness for rare disease. Here are just a few things you can do to join them. Wear your favorite pair of jeans today to help the Global Genes Project promote the Blue Denim Genes Ribbon Use the hashtags #CareAboutRare and #WRDD2014 and share them with @GlobalGenes on Twitter and Facebook Find an event in your state and participate in local activities Print out this flyer, take a photo of yourself with it, and submit it to Handprints Across America Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS (Lou Gehrig’s Disease) in 1998, and their family’s experiences with the condition led to …

Uniting for hope on Rare Disease Day 2014 Read More »

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 panel discussion about connecting communities online, which was a hot topic of the day, along with patient registries, and putting patients and their families first. @bheywood joined Kyle Brown of @patientregistry, @ThePatientsSide of @caresync, and @bar2bar2 to share about how open and patient-centric registries with information that all stakeholders care about—physicians, patients, researchers, caregivers—are better for research. Partnering expands resources to support a robust and large registries, and listening to what patients and families are saying creates a better set of information. Here’s a cool doodle from @dianedurand with a summary of the panel: Collaboration is not only key when it comes to open registries, we learned on another panel with @billstrong of @gsfoundation, John of @Child_Neurology, @keeganj of @fpwr, and Sue of @TaySachs. Collaboration is also important for nonprofits and people thinking about starting a nonprofit. It’s not a zero sum game: when nonprofits collaborate, …

PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit Read More »

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 change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates. In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if …

Recognizing the Rare Disease Community’s Champions of Hope Read More »

Scroll to Top