Resources

Start looking for answers here.

We understand how frustrating it can be to spend hours searching for answers. Pyruvate Kinase Deficiency is already rare enough! Here’s the spot where you can start your journey to answering your questions.

Disclaimer: Thrive with Pyruvate Kinase Deficiency Organization did not produce any of the information listed below. Please contact the supporting authors, company, or source for questions and comments.


Videos

The video page has both personal stories and educational resources.


General Information

Pyruvate Kinase Deficiency 101

Living with PK deficiency – Quick Reference Guide (2021)

StatPearls Continuing Education – Pyruvate Kinase Deficiency (2021)

Understanding Pyruvate Kinase (PK) Deficiency – Managing PK deficiency and moving forward (2021)

Pyruvate Kinase Deficiency Through the Decade – 2010 to 2020 (2020)

Medscape webpage for Pyruvate Kinase Deficiency (2019)

NORD webpage for Pyruvate Kinase Deficiency (2019)

MedlinePlus webpage for Pyruvate kinase deficiency (2012)

Diagnosis & Genetics

Agios PK Deficiency Doctor Discussion Guide (2020)

FAQs about Rocket’s Gene Therapy Approach to PKD / Rocket Pharma (updated 2021)

Caregivers & General Care

Caring for patients with PK deficiency (2020)

Fast Facts for Patients and Supporters – Pyruvate Kinase Deficiency (2018)

Monitoring your PK deficiency over time (2021)

Understanding Pyruvate Kinase (PK) Deficiency – Information for caregivers (2021)

Voice of the Patient Report – Pyruvate Kinase Deficiency (2020)

Therapeutic Advances in Rare Disease Journal (2020)

Pediatrics / Babies & Kids

KidsHealth information on Pyruvate Kinase Deficiency (2020)

Health-Related Quality Of Life (HRQOL) In Pediatric Patients With Red Cell Pyruvate Kinase Deficiency (2018)

For Students

Agios / Quick Reference Guide for Teachers and Parents (2021)

NERGN / IFSPs, IEPs, and 504 Overview


Scholarly Articles

The scholarly articles page includes scientific research and studies.


Are we missing anything?

If you have a great PKD resource to add to our collection, please contact us at twpkdnonprofit@gmail.com with the title and a public link!


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