LIVING WITH A
RARE DISEASE

Learn more about your disease and Hear from the CareConnectPSS community about their unique journey with a rare disease

Click the links below for more information on:
Journey Ahead Video Episode 1

Video Episode 1 Journey Ahead

Two patients and their care partners learning from each other’s experiences on transitioning from their parents’ home to college and managing their disease

Lifestyle Video Episode 2

Video Episode 2 Lifestyle

Focusing on how adults with rare disease manage their day-to-day lives, including working, family, relationships, and leading an active lifestyle, plus a reminder on open enrollment

The Family Circle Video Episode 3

Video Episode 3 The family circle (voices of the care partners)

Two care partners talking about ways that they provide support to their loved one, tips and tools to help the parent empower their child, and how can the spouse be more understanding

Podcast
Episode 1
Diagnosis

Hear from a person living with a rare disease about his/her diagnosis journey: what led to the diagnosis, how it happened, and how long it took. This episode also focuses on the emotional burden that occurs and the effect is has on the entire family.

Podcast
Episode 2
Disease Management

Listen to a rare diseases medical expert and a person living with a rare disease discuss key things to consider and questions to ask regarding disease management and treatment initiation.

Podcast
Episode 3
Life & Relationships

This episode details the importance of family members and their input and experience with getting support for themselves.

Podcast
Episode 4
What lies ahead

This episode will focus on a patient's goals and aspirations about the future of living with a rare disease.

What are LSDs?

What are LSDs?

LSDs are a group of rare inherited genetic disorders, where tiny structures called lysosomes found in the cells in the body do not work the way they are supposed to work

Talk to your CareConnectPSS team Talk to your CareConnectPSS
team: Call 1-800-745-4447 Option 3 or request more information