Note: Information on Thalassemia and Sickle Cell Anemia may be included because these diseases are similar hemolytic anemias.
Patient Assistance
Free genetic testing through Anemia ID
myAgios Patient Support Services
Novartis Jadenu (medication) Assistance Program
GoodRx Prescription Drug Savings Card
Financial Aid for Patients & Families (NIH)
Medicaid & CHIP Health Insurance
Social Security Disability Income Application
Social Security Disability Evaluation for Hematological Disorders in Adults
Social Security Disability Evaluation for Hematological Disorders in Children
Center for Parent Information & Resources on Education for Children with Disabilities
Nutrition
Nutrition for Patients with Thalassemia & Pyruvate Kinase Deficiency (2023)
Gene & Cell Therapy
Rocket Pharma Gene Therapy Powerpoint Information (2022)
Lentiviral gene therapy for Pyruvate Kinase Deficiency (video) (2021)
Study Opportunities
Peak Registry Study /in progress
Gene Therapy (Pediatric) / start date was July 6, 2020
Mitapivat in Pediatric Patients / 2022
Mental Healthcare
Tools for Student Mental Health (2022)
Addiction & Mental Health Resources: Live Another Day
Find a Therapist / Psychology Today
10 Young People Changing Their Communities For Mental Health / Mental Health America
Report an Adverse Event or Serious Problem to the FDA
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!