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Using HIPAA compliant emails to support families in Angelman syndrome care

Written by Caitlin Anthoney | August 20, 2024

Providers can send HIPAA compliant emails to families dealing with Angelman syndrome. These emails can include medical information, treatment updates, and resources to support families managing the condition.

 

What is Angelman syndrome?

Angelman syndrome (AS) is a genetic disorder associated with developmental delays, speech impairments, and motor difficulties. According to the National Institute of Neurological Disorders and Stroke (NINDS), “there is no specific therapy for AS.” However, “seizures may be treated with medications and dietary therapies,” and “sleep issues may be treated with medications and sleep training.”

So, parents need guidance on managing AS symptoms and coordinating care for their children.

 

Support for Angelman syndrome

Providers can support parents of children with Angelman syndrome, helping them locate “information and resources related to communication” according to telehealth training interventions for mothers of children with Angelman syndrome.

More specifically, providers can use HIPAA compliant emails to send parents personalized guidance on managing symptoms, coordinating care, and accessing resources. 

For example, HIPAA compliant emails can send medication reminders, updates on new therapies, or advice on handling sleep disturbances. These emails can also include educational materials tailored to the child’s needs, helping parents better understand the condition.

 

Using HIPAA compliant emails to support families

Personalized support

Providers can send personalized HIPAA compliant emails to parents of children with Angelman syndrome. These emails can be tailored to address the needs of each family. 

For example, providers can include resources for managing communication challenges, like using alternative communication methods such as sign language or picture boards.

 

Medication reminders 

HIPAA compliant emails can be automated with reminders so parents can give their child with AS their medications on time. Additionally, these automated emails can include information about dosage instructions and potential side effects.

 

Updates on new therapies

As medical advancements and new therapies become available, providers can share these updates with parents. For example, providers can securely email parents information about clinical trials or new treatment options that benefit individuals with Angelman syndrome. 

 

Advice on handling sleep disturbances

Since sleep disturbances are common in children with Angelman syndrome, providers can offer practical advice on managing these challenges, like sending HIPAA compliant emails with tips on sleep training.

 

Educational materials

HIPAA compliant emails can include educational materials that explain the condition in detail, offer strategies for communication, and provide insights into the child’s development. 

Ultimately, these resources can give parents the knowledge they need to advocate for their children and make informed decisions about their care.

Read also: Using email and text messaging in health advocacy

 

FAQs

What makes an email HIPAA compliant?

An email is HIPAA compliant if sent through a secure platform that uses encryption, access controls, and authentication methods to safeguard protected health information (PHI). Providers must also obtain explicit consent from recipients before sending these emails.

 

Can HIPAA compliant emails include attachments?

Yes, HIPAA compliant email platforms securely encrypt attachments, such as documents or images, ensuring that all types of PHI are protected during transmission and storage.

 

Can providers use personal email accounts for HIPAA compliant communication?

No, providers must use a HIPAA compliant email solution, like Paubox, which ensures that all communications meet regulatory standards and maintains patient privacy.