Become a PFIC Ambassador

There is an extreme need for individual peer support and mentorship that only patients or caregivers can provide based on firsthand experiences. Patients and caregivers who are knowledgeable, resourceful, and willing to help others are all part of the PFIC Ambassador team. We have recognized the impact of ambassadors who understand the specific burden of our community. Not only will ambassadors be available for support in their own communities, but they will also be able to identify the knowledge and resource gaps that each unique part of our population may have and work towards finding solutions. In addition to providing mentorship, support and awareness for PFIC patients and families, ambassadors both govern and guide our organization.

Below is a list of all available ways that you can get involved as a PFIC Ambassador. There is a range of opportunities, so whether you would like to get involved in a structured council or board, be a mentor or simply lend a hand from time to time, all PFIC ambassadors are a vital part to our mission, to improve the lives of PFIC patients and families worldwide.

Mentors & Community Representatives


PFIC Mentors


Mentors understand the specific burden that PFIC can have on a patient and family through first hand experiences. Mentors are knowledgeable in the needs of PFIC patient community and know how to assist in finding resources, either from their own experiences or from working with others. Mentorship involves providing connecting with patients and families in need, and provides peer support specific to one’s geographic location, age, subtype or need. Mentors have had a profound positive impact on patients and families in our community. Mentors who understand the specific burdens of that population.
 

 

PFIC Patient Engagement: Opportunities to Share your Experiences


 For all those ambassadors who are interested in sharing their story to raise disease awareness, participating in patient engagement opporutnities is a great place to start. Ambassadors who choose to stay aware of these opportunities can be added to an email listserv that will send notifications of opportunities when available. These opporutnities will also be added to our community engagement bulletin board. The flow of notifications will depend on the asks. 

The patient engagement process was established to eliminate burden on our community, while ensuring that each ask for the patient voice is met with opportunity to participate. 

Steering Committees & Resource Guidance


Patient & Parent Advisory Board

The PFIC Network’s Patient/Parent Advisory Board is a group of volunteers who are willing to keep up with the goals of the PFIC Network and provide input to what is going on with the organization. This board serves as a steering committee to help guide the organization and its activities and ensure that the PFIC Network’s activities are in line with the needs of the patient community. The Advisory Board will provide input and stay committed to furthering the PFIC Network’s mission to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.


Global Advisory Board

The Global Advisory Board is a group of ambassadors from various geographic locations who are willing to come together to discuss the needs of the global PFIC community. This board serves to empower advocates to work together to ensure the needs of the PFIC patient community are met. The Advisory Board will provide input and stay committed to furthering the PFIC Network’s mission to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.
Each region will have different needs, but an overlapping purpose may exist. Specific opportunities unique to this board may include, but are not limited to, building community in your area, working with local advocacy organizations to build resources, ensuring available resources are reaching your local community, fostering relationships with specialists in your area, assisting with language barriers and ensuring that available resources meet the language needs of your community.


Leadership


PFIC Network Board of Directors


 The PFIC Network’s Board of Directors governs the organization’s strategic and organizational management. The Board of Directors share the organization’s work and values with the community, professionally represent the organization and act as an ambassador for the PFIC Network. The Board of Directors share our constituencies’ needs and values with the organization, speak for their interests, and on their behalf, and hold the organization accountable.  All members of the PFIC Network Board of Directors are committed to furthering the PFIC Network’s mission to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. 


Global Leadership Council

The Global Leadership Council consists of leaders from each of the active countries that have committed to formalized advocacy for PFIC patients in their region. The global leadership council sees the big picture. We work together to build a strategy based on feedback from all other councils and committees to establish a strategic plan amongst groups to ensure that the most pressing needs of the global community are met. This council serves as a shared governance committee and a collaboration amongst PFIC leaders across the world.

If you are interested in learning more about becoming a PFIC Ambassador, and having full access to ambassador resources, please email info@pfic.org!