While more and more clinics are becoming Certified Duchenne Care Centers (thank you, Parent Project Muscular Dystrophy!), we still have quite a ways to go in educating our medical professionals.
Many professionals lack knowledge about current medical care for Duchenne. Unfortunately, it is often up to caregivers to educate the medical personnel and sometimes caregivers advocate for hours to no avail. Sometimes medical professionals will only listen to other medical professionals.
Here’s a way to make that education and advocacy easier for you. Copy the information below and send it to your provider. Done!
While geared towards educating the healthcare community, caregivers for individuals with Duchenne may want to watch the webinars themselves. An experienced DMD parent can easily follow the medical jargon in the link.
From 2022-2023, the American Academy of Pediatrics (AAP) hosted a free online continuing education ECHO course (Extension for Community Healthcare Outcomes) about Duchenne for healthcare providers (pediatricians, nurses, PTs, OTs, SLPs, etc.). The recorded part of each session is about a half hour long.
Topics include:
1. Symptomology and Diagnosis
2. Proactive Care in the Medical Home
3. Multidisciplinary Care for DMD
4. Bone Health Management/Endocrine Care
5. Cardiology
6. GI and Nutrition
7. Emergency Care
8. Neuropsychiatric Comorbidities
9. Pulmonology
10. Transitions and Palliative Care
11. Supporting Families with Chronic Conditions
12. Habilitative Services
Access the course here: https://www.aap.org/en/patient-care/duchenne-muscular-dystrophy/duchenne-muscular-dystrophy-extension-of-community-health-outcomes-project/
For more information, contact Lisa Brock, ECHO Program Manager, at lbrock@aap.org.