Community Engagement Bulletin

External Engagement Opportunities

For research or to improve scientific understanding of patient experiences with PFIC

We strive to protect the best interests of community members. All external engagement opportunities are submitted through a patient engagement form. All external partners receive a copy of and must abide by the PFIC Network’s Guidelines for External Stakeholder Engagement. 

Industry Partner opportunity:

Sanguine Biosciences

Moderna At-Home Research Study

– PFIC 2 Patient between 2-17 YRS old
– Deadline: August 2022
– $200 reimbursement for participation

Moderna is looking to enroll 10 patients in this study to collect serum samples. US ONLY.


Advocacy Opportunities

Current opportunities to get involved with rare disease and/or liver organizations

Join the Phone Tree!

What is the Phone Tree?

The phone tree is a tool for us to use as a community to notify each other of issues, advocacy opportunities, and engagement opportunities as they arise. The phone tree starts with the PFIC Network phone tree manager, who oversees the phone tree and is the one who begins “calling” other volunteers who have joined. A “call”  can be as simple as an email or direct message, or a direct phone call when appropriate.

Advocacy Opportunities from

GLI


Advocacy Opportunities from

NASPGHAN


Advocacy Opportunities from the

EveryLife Foundation


Submit Art for the Rare Artist Program

The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals with, or affiliated with, a rare disease to tell their story through art.

Rare Artist 2022 will be open for submissions June 1 – July 13

Rare Artist awardees are presented with checks and invited to speak during Rare Disease Week on Capitol Hill in Washington, D.C.!


What’s Your Story Submissions Wanted:

What’s Your Story? is a new online rare disease story bank for advocates  to share experiences on a wide-range of issues impacting the rare disease community.

Questions range from:
diagnosis
challenges gaining access to therapies
facing discrimination
and more

There is also a chance at winning a $1,500 donation to a rare disease organization of your choice.


PFIC Network Community driven initiatives

Opportunities to participate and share & participate within the PFIC community

Community Spotlight

The amazing community members at the Scientific Conference!

Do you want to write a blog post or maybe nominate someone to be in the community spotlight? Let us know by clicking the buttons below! All input is welcome.