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Exploring Care Teams

Virtually meet the varying members of a Pompe care team

A big part of coming together means connecting with the right doctors, therapists, and counselors to support each individual with Pompe disease. Knowing who may be on the care team and how they can help is an important first step towards taking on Pompe disease.

 

When we align with medical teams to help improve care—we Pompe Together.
Specialist card

Specialist

Treats Pompe disease or related health issues

Physical therapist

Physical therapist

Creates and keeps track of exercise plans

Nutritionist

Offers advice on healthy food choices and nutrition

Psychologist

Psychologist

Helps patients and caregivers with their feelings and emotions

Genetic counselor

Genetic counselor

Offers advice and support to people living with inherited conditions

Respiratory therapist

Respiratory therapist

Helps when individuals have trouble breathing

Speech therapist

Speech therapist

Helps individuals speak more clearly

Occupational therapist

Occupational therapist

Helps people perform everyday tasks like dressing, eating, and bathing

Orthotist

Orthotist

Makes and fits braces and splints for added support

Infusion nurse

Infusion nurse

Administers medications delivered by intravenous (IV) infusion

Home health nurse

Home health nurse

Can provide one-on-one care in someone’s home

Members of the Pompe disease care team
Virtually meet the varying members of a Pompe care team
Clinical trials are an option for some people

Talking about clinical trials

Researchers continue to study new or improved treatments for Pompe disease. This includes finding ways to increase the amount of GAA enzyme in the body or correcting the genetic mutation that causes Pompe disease. Before looking into whether a clinical trial may help, it’s important to talk to the care team to understand the risks and benefits.