How would you like to help?
We are a very small nonprofit organization that represents a very rare disease with a really big reach! We need your help to make sure we have the greatest impact on our community. Whether you are interested in becoming a mentor for others, sharing your story to connect and advocate, advocating for policy or system level changes, helping us raise funds for programs and operations, or just general want to get involved; we need volunteers like you!
- Become a Parent or Teen ambassador to give or receive mentorship for others who are just like you with our Parent or Teen Ambassador Program
- Send a care package to someone in need, whether a patient in the hospital, a caregiver who is in need of some extra support, or a family member who could use a pick me up with our PFIC Care Program
- Connect your child with children just like him or her with the PFIC Pals Program
- Tell your story. You never know who is listening, and what kind of difference it can make.
- Stay connected with your areas policy and regulatory initiatives. Participate in opportunities to tell the patient story to those who can make the changes.
- Take part in local conference and networking opportunities.
- Meet others in your area and join forces to identify the needs of the pfic community in your specific location in order to find solutions and provide resources.
- Help us plan important events in our community including PFIC Awareness Day, Rare Disease Day and PFIC Network Family Conference 2021 by joining our events committee.
- Tell your story! Get connected and share your family story. Whatever story you feel you need to tell. Share it with us for our website, for the media or for awareness events.
- Like and follow us on social media! Share our posts during campaigns!
Linked in: www.linkedin/company/pficnetwork
You Tube: https://www.youtube.com/channel/UCOmB-ep0Dc7esDtEY1XZJ3Q
What it entails:
- Spread the word in your own community, share the wealth to help PFIC families worldwide!
- PFIC Network will provide fundraising toolkits for ANY individual, family or organization that is interested in hosting a fundraiser for the PFIC Network
- Contact firstname.lastname@example.org for more information