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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, …

jonah

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 …

raredaily

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 …

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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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NORD

Lisa Skrezec Charity Leave a Comment

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 …

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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 …