Advocating for Sjögren’s Patients

At the Sjögren’s Foundation, we believe public policy plays an important role in improving the lives of people living with Sjögren’s disease. Whether advocating for increased research funding or for policies that lower costs and expand access to high-quality health care, we engage to ensure the needs of our community are heard and addressed. We are committed to taking action on issues that directly impact people living with Sjögren’s disease. In all of our work, we follow evidence-based science in health recommendations and encourage patients to consult with their own doctors about personal health decisions.

The Sjögren’s Foundation supports smart policies that lower out-of-pocket costs and remove barriers to timely, high-quality treatment and care. Advocacy is one of our four mission pillars, and we act when policy directly affects people living with Sjögren’s.

How Do We Decide What to Engage On?

The Sjögren’s Foundation takes a focused, non-partisan approach to advocacy. Our priorities align with issues that:

• Directly impact patients and families living with Sjögren’s disease
• Have the potential to advance research, treatment access, or disease-state awareness
• Positively contribute to the broader autoimmune and chronic disease community
• Align with our mission pillars and strategic priorities
  • Our mission pillars are:
    • Support Sjögren’s patients and their loved ones through education, resources and services
    • Provide credible resources and education for healthcare professionals
    • Serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives
    • Lead, encourage and fund innovative research projects to better understand, diagnose and treat Sjögren’s

Our Current Policy Priorities

• Raising Awareness of Sjögren’s Disease as Serious and Systemic
  • Sjögren’s is often misunderstood as only causing dryness, but it is a serious and systemic autoimmune disease that can affect nearly every organ system. We advocate for greater awareness among policymakers, healthcare providers, and the public to ensure that the full impact of the disease is recognized.
• Preserving and Advancing Research and Patient-Minded Public Health Initiatives
  • Scientific research is the foundation for earlier diagnosis, and Sjögren’s disease management and treatment. We champion policies that increase federal funding for autoimmune research, expand Sjögren’s-specific studies, and encourage collaboration across institutes and offices at the NIH.
• Ensuring Patient Voices Are Included Throughout Drug Development
  • We work with federal agencies and stakeholders to make sure patients’ experiences and needs are reflected when new therapies are being developed or reviewed.
• Collaborating for Impact
  • No single organization can solve these challenges alone. We partner with coalitions and mission-related organizations to advance public health initiatives and strengthen the Sjögren’s, autoimmune and chronic disease communities.