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Past AMDA Webinars
When A Hospital and A Patient Organization Work Together & The Value of Patient Reported Outcomes
Title: When A Hospital and A Patient Organization Work Together
Date: Tuesday, March 28, 2023
Time: 1 PM CT / 2 PM ET
Speaker:
Maudy Theunissen, MD
Webinar Overview:
In this presentation I will show some more important results from the IPA/Erasmus MC Pompe Survey: what have we learned from patient-reported outcomesInformation about health, symptoms, or quality of life reported directly by patients. More and why is this important? I will show what we have changed recently to improve the Pompe Survey and will provide information on how to participate. I will also address the first results of another collaboration between the Erasmus MC University Medical Center and the International Pompe Association (IPA): a questionnaire-based study on the impact of COVID-19 infection(s), the pandemic and associated control measures on patients with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More worldwide.
Title: The Value of Patient Reported OutcomesInformation about health, symptoms, or quality of life reported directly by patients. More: The Patients’ Voice
Speaker:
Nadine van der Beek, MD, PhD
Webinar Overview:
In this presentation, Dr. Nadine van der Beek will highlight the additional value of patient-reported outcomesInformation about health, symptoms, or quality of life reported directly by patients. More to traditional outcomes such as walking distance or pulmonary function. She will show some important results from the IPA/Erasmus MC Pompe survey, which has existed since 2002, and discuss some important issues such as fatigueA strong sense of tiredness or low energy that does not fully improve with rest. More and quality of life. And as a last point, she will also address the development of a Pompe-specific questionnaire which is able to measure patients’ abilities in daily living.
Insurance 101 Webinar
Title: Insurance 101: Learning the Basics
Date: Tuesday, December 13, 2022
Time: 1 PM CT / 2 PM ET
Speaker:
Amy DeStefanis, LCSW, CCM
Webinar Overview:
Insurance 101 will guide the participants through a discussion of the main types of health insurance coverage, types of health insurance plans, things to consider when choosing a plan, open enrollment, qualifying events and will also highlight CareConnect Patient Support Services program, along with our resources and support.
In Utero ERT Webinar
Title: In Utero EnzymeA protein that helps the body carry out chemical reactions. More Replacement Therapy for Lysosomal Storage DiseasesA group of diseases in which substances build up inside lysosomes because the body cannot break them... More
Date: Friday, September 16, 2022
Time: 1 PM / 2 PM ET
Speaker:
Jeniffer L. Cohen, MD, Assistant Professor of Pediatrics at Duke University
Webinar Overview:
Dr. Cohen will provide an overview of the importance of early treatment in lysosomal storage diseasesA group of diseases in which substances build up inside lysosomes because the body cannot break them... More, the principles, and methods behind in utero therapy, and will present data from the first patient with infantile onset Pompe diseaseA severe form of Pompe disease that begins in infancy and often affects the heart and muscles. More treated with in utero enzymeA protein that helps the body carry out chemical reactions. More replacement therapy.