Below you'll find a list of all posts that have been categorized as “Charity”
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 …
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 …
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 …
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 …
Mark your calendars & bring your appetite — on Wednesday, August 20th, we’ll be hosting a charity dinner at Buffalo Wild Wings in Riverhead, NY! If you bring one of the flyers for our event, 15% of your bill will go to NORD (National Organization for Rare Disorders). Here at Orphan Drug Solutions, we’re all about being healthy and staying active, but on …
Throughout our extensive research, we came across NORD’s (the National Organization for Rare Disorders) website countless time. They are not only a non-profit organization, but a provider of various information pertaining to the rare disease community. While their website may be overwhelming at first, it is filled with helpful information for all, whether you’re a patient, advocate, or medical professional. They …
As a previous Spartan Racer myself, we’re proud to say that we’re participating in the “CHARITY CHALLENGE” Spartan Sprint located in Killington, Vermont on September 21st 2014! With mental and physical challenges like no other, we’ll be running up mountainous hills for 4.5 miles that are over 3x the size of the Empire State Building, climbing our way over 10 …
What’s better than participating in charity events for the rare disease community and keeping our team healthy? Not much — which is why we have 5ks, walks, and other runs lined up this summer/fall! While the majority of the action in the rare disease community is either on the west coast in California or up north in Massachusetts, we were able to search far …
