Reflections on Rare Disease Day 2019

I had the pleasure of attending MassBio’s 2019 Rare Disease Day event – a day which (I didn’t know) has been in existence for 11 years!

Rare Disease Day takes place on the last day of February each year. The event by MassBio sought to raise awareness to both the public and industry decision-makers about rare diseases and their impact on patient lives.

The event opened with a breakfast, followed by a panel featuring three unique patients; Lisa Deck, Stroke Patient and Rare Disease Advocate; Austin Leclaire, Duchenne Muscular Dystrophy Patient and Advocate, and Keisha Geaves, Muscular Dystrophy Massachusetts State Ambassador and Business Owner of Girls Chronically Rock.

Each panelist told their personal stories, spoke about what has worked for them, the road bumps they’ve encountered, and what they do to overcome these obstacles. Each spoke about their life day-to-day, and what they have learned from being a part of what has become a community.

Most rare diseases you cannot actually ‘see’ which was one of the take-home messages for me personally—you may never know that someone is going through something just by looking at what is on the surface. The second panel included leaders in the industry, addressing how the biopharma industry is going beyond treatment to help heal the whole patient – as well as support their caregivers.

In America, 1 in 10 individuals have rare diseases – and there are approximately 7,000 different rare diseases in total. Learn more about Rare Disease Day here.

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Emily Marschok, Consultant

Emily Marschok has more than 2.5 years of experience in the CRO industry and Clinical Operations. Emily has worked on several oncology and hematology trials ranging throughout several different phases.

Prior to joining Halloran, Emily was a Clinical Research Associate at PAREXEL where she oversaw numerous clinical sites across multiple clinical trials working to achieve FDA approval. Emily has worked as an in-house monitor working on a fast-paced phase III start-up trial in multiple myeloma. She has also spent time performing organic syntheses in an Organic Chemistry Laboratory at the University of New Hampshire.

Emily earned a Bachelor of Science in Biomedical Science specializing in Medical and Veterinary sciences from the University of New Hampshire.