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“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 …

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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 …

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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 …

BWW Flyer

Dine and Donate!

Lisa Skrezec Events, Charity Leave a Comment

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 …

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New Boston Research Center Aims to Identify Rare Diseases

Lisa Skrezec News Leave a Comment

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 …

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21st Century Cures Initiative

Lisa Skrezec News Leave a Comment

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 …

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This Is Sparta!

Lisa Skrezec Charity Leave a Comment

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 …

running

Making a Difference, One Step At a Time

Lisa Skrezec Charity

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 …