Resources

Start looking for answers here.

We understand how frustrating it can be to spend hours searching for answers. Thrive with PKD is here to help you find answers.

Note: Information on Thalassemia and Sickle Cell Anemia may be included because these diseases are similar hemolytic anemias.


PKD-friendly Doctors

Thrive is both working on a list with the dream of connecting patients to PKD experts and seeking your help to grow this resource!


Videos


General Information

Patient and caregiver’s relationship with their hematologist can define the mood of this chronic disease. A White Paper reveals how over 275 people affected by PK deficiency from 11 countries perceive their interactions with their doctor. Now in Spanish, French, German, Italian and Arabic.

#Rarebutnotalone #pyruvatekinasedeficiency

Pyruvate Kinase Deficiency 101

PKD Infograph- The Blood Project (2022)

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)

What’s a Genome? / NIH

Caregivers & General Care

Transitional Care Info (website)

Courageous Parents Network

Monitoring PK deficiency (2021)

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

Caring for patients with PK deficiency (2020)

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

Therapeutic Advances in Rare Disease Journal (2020)

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

Pediatrics / Babies & Kids

KidsHealth information on Pyruvate Kinase Deficiency (2020)

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

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

For Students

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

NERGN / IFSPs, IEPs, and 504 Overview

CPIR / Center for Parent Information & Resources on Education for Children with Disabilities


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 info@thrivewithpkd.org with the title and a public link!


Join our email list for updates:

Processing…
Success! You're on the list.