This site is intended for US audiences only.
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, nutritionists, and counselors to support individuals and their needs. Knowing who may be part of a coordinated Pompe disease care team—and how they can help navigate symptoms and treatment decisions—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

Nutritionist

Offers advice on healthy food choices, diet, and nutrition

Psychologist

Psychologist

Helps patients and caregivers with their feelings and emotions, including access to mental health support

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

Provides 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

Are clinical trials an option for some people with Pompe disease?

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 your care team to understand the risks and possible benefits.