Dear Rare Disease Community,
I am so excited to be stepping into the role of CEO for Global Genes – an organization that I admire and has done so much for the rare disease community.
Like many in rare disease, I didn’t start my career out in this space. I joined the community because I needed support and resources. I stayed because of the connections I made and my belief that others should have the same support I have had. Now I have the opportunity to continue working with all of you in our relentless efforts to impact positive change across the globe.
I am in awe of what has been built by the amazing Global Genes staff and volunteers. Nicole identified a need, envisioned a way to address it, and made Global Genes come to life. I respect everything she has done and I am looking forward to her ongoing inspiration and guidance as a member of our board.
In the last year, Global Genes has nearly doubled in size and is in the process of rolling out several new programs to enable us to provide a larger patient impact globally. The rare disease space and healthcare overall keep evolving and patients, caregivers and advocates have a growing opportunity to fully engage in their care and become drivers of change. It is more important than ever that Global Genes exists to help the rare disease community connect with stakeholders and decision makers in every sector that impacts patients and caregivers. We will continue to empower the community through education and resources and increase awareness of rare disease. It is my sincerest hope that Global Genes will remain as much an inspiration to all of you as you have been to me and the Global Genes team.
I am confident that this is just the beginning for Global Genes and I am looking forward to seeing what we can all accomplish together to drive forward momentum for rare disease globally.
Always in hope,