“Painting For A Cause”

Lisa Skrezec Events, Charity Leave a Comment

This year, we were super excited to participate in and raise awareness for Rare Disease Day! Being this is our first year, we wanted to do something extra special and fun to bring the community together for a good cause. In conjunction with Cullen’s Crusaders and the Crazy Crepe Cafe, we help our ‘Painting For A Cause’ event! On February 28th …


2015 Run For Rare

Lisa Skrezec Charity Leave a Comment

As most of you know, we’ve been extremely busy organizing the 1st Annual Denim Dash Virtual 5K Run/Walk with the Global Genes Project! During our planning with their team, they shed light on Noah Coughlan and Run For Rare. On February 28th, World Rare Disease Day, Noah is setting out for a THIRD time, to run across the country! 3,100 miles 127 …


How ODS Improved Viropharma’s Patient Care

Lisa Skrezec News Leave a Comment

In 2006 when Orphan Drug Solutions first went to Viropharma’s offices (prior to them being acquired by Shire), they had 80 employees dedicated to the advancement of their primary drug, Cinryze. Cinryze was and is the only FDA-approved C1 esterase inhibitor therapy used to treat HAE (Hereditary Angioedema), so its success was not just important for them as a company, …


Google Announces New Project That Could Detect Cancer

Lisa Skrezec News Leave a Comment

Googled unveiled an interesting futuristic project at the WSJD Live conference that could someday embed nanoparticles in your bloodstream to detect diseases like cancer. The goal behind the GoogleX lab project is to develop a system that doctors can rely on for all of our tests. You would swallow a pill with nanoparticles, which would then bind themselves to cells …


8 Year Old Boy Raises $800K For Rare Disease

Lisa Skrezec Charity Leave a Comment

While there are many negative stories floating around about the youth of our country, it is always exciting to come across a story that literally puts a smile on your face. An 8-year-old boy has raised over $800,000 for his friend who suffers from a rare disease. That headline alone made my jaw drop. Lora Purtnazarian and her husband Rabin …


Global Genes™ Launches RARE Daily!

Lisa Skrezec Charity Leave a Comment

We are super excited for our friends at Global Genes as they launch RARE Daily! Global Genes’ RARE Blog has been re-imagined to bring more opportunities for rare disease patients to learn and stay informed on important issues with a team or new contributors and subject-matter experts within the rare disease community. “The new format of the RARE Daily provides …


ALS Ice Bucket Challenge Is Winning

Lisa Skrezec News Leave a Comment

Social media has made some pretty ridiculous trends popular over the last few years, but let’s face it — we all love ridiculous. Our culture thrives on shock value and we all love sharing it with our friends online. But, social media has brought us a new trend that actually made a difference. It’s addicting, it’s viral, it’s unavoidable — the …