![]() The importance of industry and academia collaboration with patient advocacy groups was apparent throughout Rare Disease Day 2021 and was shared across several sessions. Here are some key messages from the event: Collaboration is Key “The last year has seen a historic…accuracy in the development of therapeutics and vaccines for COVID-19 and the urgency we have seen in the public and private sector is the kind of urgency that we feel in the rare disease community every day.” Christopher Austin, Director of NCATS, commended the rare disease community on their commitment to progressing research for rare disease patients and expounded on the importance of rare disease treatment. COVID-19 has taught us that we are all still connected regardless of where we live.ĭr. Most importantly, this day enabled us to reinvigorate our passion to advance treatments for rare disease patients and reminds us that the patient is the central point of our work. Rare Disease Day 2021 was an opportunity to collaborate, learn from one another, and celebrate the work that continues to move forward. The energy and passion researchers, physicians, regulators, and patient advocates harness to work together was clear. Earlier this month, I participated in the virtual Rare Disease Day 2021 activities hosted by the National Institutes of Health (NIH) Clinical Center and National Center for Advancing Translational Sciences (NCATS) as part of the global observance to focus the world’s attention on this important subject. They also face additional stressors associated with the current global health crisis posed by COVID-19 over the past year. Individuals living with rare diseases have a lot to navigate with regards to the availability of, and access to, life-saving medications. Wednesday, MaUBC’s Senior Director of Patient & Physician Services Shazia Ahmad attended the virtual Rare Disease Day 2021 on March 1 Wishing you all the power and have a happy Rare Disease Day.Collaboration, Health Literacy, & Technology: A Patient Advocate’s Perspective From NIH’s Rare Disease Day 2021 The natural forces that are within us have the power to mend and heal diseases to some point.Wishing you a lovely life ahead on this special even of Rare Disease Day. In the end, the things that will matter are how you lived, how gracefully you have accepted things and how much you loved.Wishing you all the happiness on this Rare Disease Day. The disease you are bearing may be rare, but your hope shouldn’t be.Go out and meet each other and spend a day to remember. Celebrate this Rare Disease Day knowing you are not alone in this fight. ![]() Give them courage through your strength on this special occasion of Rare Disease Day. Be the beacon of inspiration for the people who are just like you.Here’s a list of greetings to honor those suffering from it, courtesy the Brand Boy – You have a burden which by definition is too heavy to carry on your own" - Anonymous. "If you are always trying to be normal then you will never know how it is to be amazing" - Anonymous.Focus on what you can do and not what you can't do" - Anonymous. "Rare disease day is a day where people can see this and realise the hardship of fighting something you know nothing about" - Sumathy Lal."We may be RARE, but we’ve got ROAR." -Julie Flygare."You know your disease needs more awareness when you make your doctor say 'Huh?'" - Anonymous.Here are a few quotes taken from Pinterest that commemorates the awareness day. Since then, it has been celebrated on the last day of February. This day was chosen as it's a "rare" date that happens only once in four years. 2008, EURORDIS and its Council of National Alliances launched Rare Disease Day. The target audience of this awareness day is the general public, public authorities, policymakers, researchers, health professionals and industry representatives. The main objective of celebrating this day is to raise awareness about the rare diseases and the impact it has on the lives of the patients. In the month of February, which is known for having a rare number of days, the nation celebrates Rare Disease Day.
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