Ella Balasa: Patient Voice in Healthcare

Ella Balasa is passionate about amplifying the patient voice in healthcare. Having a background in biology, I’ve experienced both sides of the research spectrum – as a patient and a scientist.  Examining antibiotic resistant bacteria in the environment, which is the same bacteria that thrive in the lungs of those with CF, my work in the lab intersected with my health. This fueled my interest in involving myself in a research capacity on committees and advisory roles with organizations providing a patient perspective and promoting patient centricity. 

Why Is advocacy Important?

PDK Foundation is an organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). We fund research, education, advocacy, support, and awareness on a national and local level. We fund basic and clinical research, nephrology fellowships, and scientific meetings with a simple goal: to discover and deliver treatments and a cure for PKD. 

Policy Making for Rare Diseases: Voice of Patients

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organizations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. 

Rare Patient Voice

This is your chance to make your voice heard when it comes to rare disease research! Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives. Our vision is to include the patient voice in research and ultimately improve the lives of patients everywhere.

Childhood Rare Disease Advocacy

The Little Miss Hannah Foundation’s mission is to help enhance the quality of life for young children diagnosed with rare, life-limiting, or undiagnosed complex medical needs, as well as children who have been placed in hospice or palliative care. The foundation also gives parents the necessary tools and financial assistance to empower them to meet their child’s unique medical and lifestyle needs, as well as provide support resources and special attention for their other children. We also work to provide support groups for all members of the family by providing fun, family-focused and sibling-focused events and activities.