Making a Difference for ARPKD/CHF
Do You Want to Make a Difference for ARPKD and Congenital Hepatic Fibrosis?
Have you asked yourself…..I wish there was some way that I could make a difference? If you have, here is your chance.
The ARPKD/CHF Alliance is spreading it’s wings. We are currently expanding the governing board. What is the formula that makes someone a good candidate? Simple…passion for our cause.
Our mission to educate, advocate, support and advance research specific to both ARPKD and CHF. Our purpose is to improve the lives of those affected. We focus solely on ARPKD/CHF.
Some of our accomplishments:
- Established a Blood/Tissue Bank and Research Survey
- Generated the largest research study for ARPKD/CHF in the world
- Co-sponsored the first ARPKD/CHF Medical Symposium
- Hosted the first ARPKD/CHF Family Conference
- Created “a voice” for this two organ disease
- Bereavement & Regional Support
- Youth Ambassador Project
- Research Grant Program
- Clinical Care Guidelines
- Free educational materials and membership
- Public service announcements
- Created a secure database for future studies with highest patient protections
- Ongoing patient representation in research and professional circles
Goals:
- Galvanize research to improve understanding and treatment
- Increase government support
- Build greater capacity for awareness, programs, and improved patient care
If interested, please contact Rosie Bernardo, ARPKD/CHF Board Member since 2004, at got2gab@gmail.com
