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 …
2014 Year in Review
Looking back on 2014, we can honestly say we’ve had an amazing first year! Prior to this year, ODS was just a concept we wanted to eventually pursue in the future — but we rolled up our sleeves and got it done! Our product, that has been a success in the past, is now completely revamped and better than ever. …
Google Announces New Project That Could Detect Cancer
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
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 …
Three Siblings Battling Rare Disease
I recently came across this article while browsing the news, it talks about three siblings (Jaxen, Tieler and Boston) that are all battling a rare white blood cell disease that makes food deadly. Each is allergic to pets, pollens and multiple foods, and has spent weeks at a time in the hospital — and they know they’ll be back sooner …
Dine and Donate!
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 …
New Boston Research Center Aims to Identify Rare Diseases
During my morning reading I came across a great article in The Boston Globe, about the opening of an undiagnosed-diseases center in Boston. We have all heard countless stories of people going months, sometimes even years, waiting to hear from their doctor as to the reasoning behind their symptoms. To think some don’t ever get the satisfaction of knowing exactly what …
21st Century Cures Initiative
NORD’s Director of the Scientific Advisory Committee, Dr. Marshall Summar, presented nine recommendations to the Energy & Commerce Committee at their hearing on the 21st Century Cures: Incorporating the Patients’ Perspective to accelerate the pace of medical breakthroughs and cures in the United States, and to speed up the process to get safe and effective drugs approved: Establish a Commission and National Plan to Determine …
This Is Sparta!
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 …
Making a Difference, One Step At a Time
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 …
- Page 1 of 2
- 1
- 2