When Andrei Andrusov announced he would step down as WAPO Chair, I was also aware that it would be difficult for anyone to step into his shoes. In the past 5 years I have observed and came to appreciate the vast entrepreneurial knowledge that Andrei had and the work he had done for WAPO.
As a former President of a grassroot non-profit organization, I am fully aware of the work and responsibilities that come with the role. I could only imagine how much more challenging it would be to be the Chair of a global non-profit. So, when the WAPO board asked me if I would step in as Chair, I was both honored and aware that the bar and responsibilities were bigger.
As a board member, I have witnessed how WAPO gradually evolved since its launch in 2016 – we are now 40 members strong and have shifted from ensuring visibility to the organization to becoming an active player in both European and Global projects where patients’ voices are always heard and present. Our mission and activities are based on our community needs and what you, our members, tell us. We value your engagement, and we wouldn’t be here without out.
I must apologize for sending this note out so late, but we have been working very hard since the May AGM with new projects and programs, including our upcoming 3rd WAPO eSummit to be held from 8-9 October 2021. Registrations will be available very soon and we encourage you to share it amongst your community, friends, HCPs and family. We welcome ALL who want to learn more about our rare disease.
Although we have come far since 2016, I’m acutely aware that there is still a lot of work that needs to be done in terms of awareness, treatment access and improvement of quality of life at a global level. As in the past, I will do my very best to lead the organization together with the board members and your suggestions and support in the coming months.