Advocacy Events
FDA Listening Session
An FDA Listening Session is an opportunity for those who experience a disease (such as PFIC) as a patient of caregiver to speak to the FDA. This allows the FDA the opportunity to understand the desperate need for further treatments to be developed. Listening sessions are used as a resource for these regulators to engage […]
Global Genes Rare Patient Advocacy Summit
The PFIC Network will be registering for and attending the Global Genes Rare Patient Advocacy Summit. Patients, ambassadors and advocates are encourage to reach out to learn more and join us! Information taken from website: Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, […]
Rare Disease Day
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Rare disease day brings people with all rare diseases together in unity to show that just because you have a rare disease, does not mean you are alone.
PFIC Awareness Day
The fifth annual PFIC Awareness Day is October 5, 2023. The PFIC community around the world will hold advocacy and awareness events to honor patients, families, and caregivers. Awareness Day is used to spread information about our rare disease to help our supporter community grow, and help us find more patients who need help and […]