Our journey at Petronille Healthy Society began with a vision of creating a positive impact on individuals facing rare diseases and underserved communities. Over the years, our commitment to empowerment, advocacy, and service has driven our work. What started as a heartfelt initiative has evolved into a thriving organization that strives to be a beacon of hope and understanding for those often overlooked.
Our history is a testament to the dedication of our team, the resilience of the communities we serve, and the support of our valued partners and donors. As we look back on our journey, we are inspired to continue making a meaningful difference in the lives of rare disease patients and underserved communities, and we're excited about the future we're building together.
Petronille Healthy Society (PHS) was officially established as a Maryland-based 501(c)(3) nonprofit dedicated to supporting individuals and families affected by rare diseases and systemic health disparities.
Community-based health education and outreach activities expanded, focusing on connecting vulnerable individuals and families with health information, services, and community resources.
Partnerships supporting disease awareness, health education, and access to community resources continued to grow, strengthening PHS’s ability to engage underserved communities.
Community engagement and health education activities adapted to the challenges of the COVID-19 pandemic, including expanded remote outreach and resource-sharing to help vulnerable individuals and families maintain access to health information and support.
The organization broadened its rare disease and health equity work and strengthened relationships with patient advocacy and healthcare organizations to expand community education, support, and access to resources.
PHS joined the Global Advocacy Alliance, a Global Genes initiative that connects and supports patient advocacy organizations internationally to strengthen collaboration and advocacy across the rare disease community.
That same year, PHS participated in a health mission to the Republic of the Congo and supported efforts surrounding the implementation of the country’s first national rare disease policy, contributing to greater recognition, advocacy, and policy attention for people living with rare diseases.
PHS launched its annual multi-stakeholder symposium series, bringing together patients, caregivers, clinicians, policymakers, advocates, and industry stakeholders to address barriers to rare disease care. The organization also developed a digital health resource platform to help families navigate diagnostic and treatment pathways.
The Tour of Maryland Supporting the Rare Disease Community was launched, beginning with a Montgomery County event that convened more than 500 participants. Community blood-drive efforts were also expanded to twice annually in partnership with the American Red Cross.
PHS began co-organizing community blood drives with the American Red Cross, with drives held twice annually to support community blood donation and raise awareness of blood-related health needs.
Maryland legislative advocacy efforts focused on strengthening protections and services for people living with sickle cell disease, including Senate Bill 0421, establishing protections for students with sickle cell disease, and House Bill 178, supporting specialized adult sickle cell clinics, a medical residency scholarship program, and workforce development, backed by a $6.138 million state appropriation for FY 2028.
If you wish to support our initiatives, please consider making a contribution by sending a check made payable to "Petronille Healthy Society Inc." to the following address:
Your support is invaluable and greatly appreciated.
.png)
