PSI Celebrates Rare Disease Day 2021

By Mindy Gold

Communication Associate

Each year on the last day of February, EURORDIS partners with organizations globally that specialize in rare diseases to celebrate Rare Disease Day. The day aims to bring attention to the more than 6,000 rare diseases that affect over 300 million people each year.

According to EURODIS, rare diseases currently affect 3.5% – 5.9% of the worldwide population. That’s over 30 million people in Europe alone but still research and quality information on the diseases are lacking and result in a delay of diagnosis. For a majority of rare diseases, there are no existing cures.

PSI works in the rare disease space regularly with trials in Hemophilia, Willebrand Disease, Paroxysmal Nocturnal Hemoglobinuria (PNH), and many more. We dedicate the work we do every day to improving the lives and treatment options for those battling against these diseases.

To show our continued support to researchers, patients, and caretakers alike, we asked our PSI team to share why promoting research in rare diseases was important to them:

To me, it is a bit personal as I have some stories of rare diseases among my very close friends. And I want people with rare diseases to feel that they are not alone and, we’ll find a solution altogether.
Yuri Titov
Country Manager, Hungary
Helping to find cures for rare diseases means everyone has a shot at a better quality of living. Many rare diseases are based on genetics. As a person with a large family, finding out how genetics play a role in rare diseases is important to me.
Kelly Spaulding
Digital Strategist
I worked in rare disease research for over six years in former monitoring and project management jobs. I am grateful for the laws passed previously for orphan drugs to ensure pharmaceutical companies can bring these products to testing and the market while still staying viable as a business. However, I saw firsthand the importance of giving individuals and their families hope. One of the things that get me up every day and coming to work is that research and the treatments we help facilitate gives people options and gives them and their families hope and a way forward.
Ladonna Mullins
Senior CRA
Rare disease research is important to me because everyone deserves to have the chance for a cure or improvement in their quality of life.
Joseph Mullen
Business Development Associate
Because everyone needs to have the same opportunity!
Iara Souza
Office Management Specialist
Research into rare diseases is important to us in order to give hope to those who need it most.
PSI Italy
There are many people suffering from the lack of diagnostic tools and treatments!
Oscar Podesta
Head of Latin America
Until there is a cure, there need to be different treatment options, and we need to help the patients through research.
Adriana Macia
Senior CRA
Because life is rare!
Maria Blasco
Regulatory Officer
As a survivor of cancer that is treatable, it is important to me that we find cures and treatments for all disease, and rare is no exception!
Carrie Gable
Director of Business Development
Finding the cure for rare diseases is important to me, as it should be for everyone, because we, as humanity, are all intertwined, like a living, breathing chain. As such, we are only as strong as our weakest link - make that link better, and all of humanity benefits. Cure that single branch, and the tree will thrive.
Avi Gibly
Senior CRA
We can do such amazing things with medicine that it's only right that we fight to improve every life.
Allison VonCannon
Events Coordinator

Rare Disease Day might only last 24 hours but aim to provide 24 hours support to those battling against a rare disease. To learn more about rare diseases, Rare Disease Day events near you, and ways that you can get involved, visit www.rarediseaseday.org. To learn more about current research efforts, orphan drugs, and rare disease policies, visit www.eurordis.org.

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