The Coalition for Hemophilia B

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How Have We Adapted to Change?</a>

This was our last group photo taken March 7, 2020. We just finished our Mental Health First Aid program with Debbie De La Riva; it was the day after our Eternal Spirit Award dinner.

Our Annual Symposium was to take place the next week. Then COVID hit. Our team came into the office and gathered what they needed. Separated by hand sanitizer, Clorox wipes, and masks, we said our goodbyes. Everything went remote. The world we knew was gone.

We pushed the dates of all our programs to virtual later in the year. Our team went to Zoom school and learned all we needed to navigate a new way of being—a way there was no handbook for. 

What about our members? Patient assistance requests were coming in at record speed, but there was also a need for another type of assistance: Did our members have laptops, internet, and training themselves? We worked very hard to ensure our members’ needs were met and offered personal Zoom training. What was the point of education and connection if we did not bridge this gap?  

Our team held strong and focused on what we could do. So, we all learned a new way of being educated and connected. It was an amazing success. We had record attendance at our online events. Members who could no longer attend in-person events for a multitude of reasons, from age to mobility issues, were now receiving the education and connection they needed. We even had members engaging from the ER and hospital beds! Hybrid programs will become our new normal.  

Something else happened. The wonderful opportunity to connect with those worldwide. We were able to attend the World Federation of Hemophilia (WFH) conference via the internet. We could join in on international conferences on a multitude of topics, ranging from emerging therapies to patient care.  

While our immediate outward surroundings grew small and limited, our worldwide reach expanded and we embraced the power of connection at a level that was beyond my wildest expectations. It is beautiful to feel the connectivity of our world, of being part of a larger whole. We will continue to do that. 

2021 is the beginning of a new way and I believe a better way. Health equity, diversity and inclusion are now at the forefront of all we do, and as our community unites with this common goal, we must also heal each other on many levels . . . and we will.  

We found our new normal and we will never go back to what we knew . . . why would we?