For better or for worse, the coronavirus hasn’t significantly affected my lifestyle. I have been self-isolating, using a mask in public places and avoiding large social gatherings for many years. Ironically, I don’t use hand sanitizers because I can’t tolerate them. Due to special dietary needs and sensitivities to personal care products, I have been buying what I need in bulk when it‘s available and on sale. I become most concerned when medications that I rely on to survive are on back order or hard to find.
As for medical assistance, I’ve been fortunate to have a healthcare team that has been allowing me to have phone visits for some time. Hospitals have always been a double-edged sword. We often have to decide whether a visit to the Emergency Department warrants the risk of contracting something that will negatively affect my health.
Unfortunately, I am not alone. I share variations of my situation with an estimated 350 million people world-wide who have rare, chronic medical conditions and/or a compromised immune system. More than half of them are children and sadly, too many of them do not reach adulthood. Rare diseases can take years to diagnose and cures are not yet available. Ninety-five per cent of the drugs being used to treat them are not FDA-approved and have to often be administered on a trial and error basis. There are more than 7000 rare disorders. Dedicated researchers, often powered by concerned parents, are making progress. They urgently require additional funding and government support to help save lives.
I think that members of the rare diseases community have a good understanding and can relate to the impact caused by the restrictions imposed by the coronavirus. Some of us know from personal experience for example, how difficult it is to not be able to have people over or attend special events with those we care about. Many have also experienced a loss of employment and financial hardship due to our health issues or that of a family member.
While life can become overwhelming at times, I am learning to appreciate and rely on the incredible strength and resilience that comes from within and is available to each of us. I wish I could introduce you to some of our brave young patients who are so much wiser than their years. They could teach us all a thing or two about being curious, enjoying simple pleasures and living life wholeheartedly. Living with uncertainty isn’t easy for any of us and it’s important to remember that you are not alone. My hope is that we will get through this crisis together and that in the process, we will begin to create a more united and compassionate world.
Marilena Manserra MSW
Note: I would like to take this opportunity to thank everyone who is making an extra effort to ensure the care and safety of vulnerable members of the community as well as those who are putting their own health at risk to serve and protect us all.
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
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