Alejandra Watson

Background

About Alejandra Watson

I am Alejandra Watson Founder and President of the Pyruvate Kinase Deficiency Foundation; I am a dedicated advocate and community leader in the rare disease space. With a profound commitment to advancing awareness and research for Pyruvate Kinase Deficiency (PKD), a rare genetic disease affecting red blood cells, I have played a pivotal role in shaping the landscape of PKD advocacy. As the Co-Founder and Administrator of the first and largest international support group for PKD, I have fostered a sense of community and support for individuals affected by this condition worldwide. Beyond this, I have actively contributed to the Agios Pharmaceuticals PK Deficiency Advocacy Advisory Council (AAC), collaborating on communications white papers and life phase models presented at prestigious events such as the National Organization for Rare Disorders (NORD) and the American Society of Hematology (ASH) in 2023. One of my significant accomplishments is my contribution to the development of the International Guidelines for the Diagnosis and Management of Pyruvate Kinase, a groundbreaking achievement published in the Lancet Hematology in December 2023. This milestone underscores my dedication to advancing the medical understanding and management of PKD on a global scale. I am actively participating in the Red Cell Revolution (RCR), a collaborative advisory council funded by Agios Pharmaceuticals. Here, alongside representatives from Thalassemia, and Sickle Cell communities, I contribute to initiatives aimed at raising awareness of hemolytic anemias. As a seasoned speaker at conferences for rare diseases and rare hemolytic anemias globally, I share my insights and experiences to educate and inspire others. Personally motivated by my role as a mother to three boys, one of whom is affected by PK Deficiency, I have been a relentless advocate since the day of his birth. This personal connection serves as a driving force in my ongoing efforts to improve the lives of those affected by PKD. I am and will remain an unwavering force in the PKD community, tirelessly working towards creating a brighter future for individuals affected by this rare genetic disease.