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:

Gaucher Disease

 

Fabry Disease

 

Pompe Disease

 

MPS I
Mucopolysaccharidosis Disease Type I

ASMD
Acid sphingomyelinase deficiency
 

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

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

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

CLICK BELOW TO LISTEN TO THE CARECONNECTPSS PODCAST SERIES:

LIVING WITH A RARE DISEASE: THE PATIENT JOURNEY
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.
 

LIVING WITH A RARE DISEASE: THE IMPORTANCE OF WELL-BEING
PODCAST EPISODE 1
COPING AFTER A DIAGNOSIS

Dr. Kendra Bjoraker discusses her definition of well-being, coping mechanisms after being diagnosed, and strategies/resources for people living with a rare disease.
PODCAST EPISODE 2
RESOURCES FOR CAREGIVERS

Listen as Dr. Bjoraker joins us on another episode to talk about a caregiver's grieving process, and how a caregiver can take care of their loved one and themselves at the same time.

WHAT ARE LSDs?

MAT-US-2000038-v4.0-08/2022. Last Updated August 2022.