03/26/2025
PKDIA Press Release
FOR IMMEDIATE RELEASE
March 20, 2025
PKDIA Announces the Merger of Two Nonprofits to Create One International Pyruvate Kinase Deficiency Nonprofit
Wolverine Lake, MI, USA – The Pyruvate Kinase Deficiency Foundation and Thrive with PK Deficiency Organization have merged to become one global nonprofit, Pyruvate Kinase Deficiency International Alliance, serving people and families affected by the rare blood disease pyruvate kinase deficiency. Pyruvate kinase deficiency (PKD) is a rare, congenital hemolytic anemia caused by homozygous or compound heterozygous mutations in the PKLR gene, with a prevalence of 3.2–8.5 individuals per million in Western populations. PKD affects people of all backgrounds around the world.
The two organizations, Pyruvate Kinase Deficiency Foundation (PKDF) and Thrive with PK Deficiency Organization (Thrive) are proud to announce the merger of their nonprofits after successfully working together on several projects fostering global accessibility and inclusivity.
Historically, the nonprofits organized in response to the FDA’s Externally-Led Patient-Focused Drug Development meeting held in 2019. It was clear that nonprofit organizations dedicated to PKD were critical to further developing international guidelines for diagnosing and treating people with PKD and that patient advocacy was needed as a vital interface for drug development and affordable healthcare to the PKD community.
Thrive with PKD and Thalassaemia International Federation (TIF) co-hosted the first international patient conference in the aftermath of the pandemic in 2021, drawing people and families affected by PKD from over six countries. Both PKDF and Thrive were involved in efforts such as developing a White Paper on the relationship between people and families affected by PKD and their hematologists, contributing to a Life Phase Model that outlines the physical and psychosocial phases of living with PKD, recruiting community members for the PKD Peak Registry, and playing critical roles in the development of the first international guidelines published in Lancet Haematology (Feb. 2024). With their track record of working together, PKDF and Thrive hosted the 2nd International PKD conference in 2024 in Minneapolis, which allowed more people affected by PK deficiency to interact with others and expert hematologists.
After the conference and with similar goals of serving the PKD community, PKDF’s and Thrive’s board of directors unanimously decided to merge into one nonprofit. Brian Goff, CEO of Agios Pharmaceuticals, commented on the decision, “..the organizations they built have decided to join forces to create an even greater impact. I have witnessed firsthand the power of their work. By establishing a space where patients and caregivers can connect, share experiences, learn, and advocate for better care, they have fostered a thriving, supportive community. Their efforts serve as a powerful reminder that leadership is about bringing people together to amplify each other’s voices to create lasting change.”
The new organization’s name is Pyruvate Kinase Deficiency International Alliance, with an interest in expanding globally. Its goal is to enhance the quality of life for patients with PK deficiency and their families by providing awareness, expanding education, and promoting advocacy. It’s websites are www.pkdia.org, www.pkdguidelines.org, and instagram handle is .
International Guidelines For The Diagnosis And Management Of Pyruvate Kinase Deficiency Services Patients And Family With PKD PKD Healthcare Professionals
