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, 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

Introduction and background, diagnosis story (what led to the diagnosis, how did it happen, how long did it take), emotional burden, effect it had on the entire family

Podcast
Episode 2
Disease Management

HCP/patient relationship and discussion, questions to ask, things to consider, what it was like to first begin treatment

Podcast
Episode 3
Life & Relationships

Adjusting to a new normal with the help of a support system. Includes input from family members about their experiences and how to get support. Importance of care partners getting support themselves

Podcast
Episode 4
What lies ahead

What is he/she looking forward to in life, goals and aspirations?

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