On March 25, 2025, the Sjögren’s Foundation, Lupus Therapeutics, and the Office of Autoimmune Disease Research (OADR-ORWH) represented the voices of millions on Capitol Hill. To honor Autoimmune Disease Awareness Month, the Sjögren’s Foundation hosted a congressional briefing to educate members of Congress and their staff about the rise in autoimmune diseases and the urgent need for greater recognition, research investment, and better support for patients living with Sjögren’s disease and other chronic conditions such as lupus. The briefing was titled Chronic Disease Burden: Sjögren’s, Lupus, and the Autoimmune Crisis.
The timing of the event couldn’t have been more powerful. Less than 24 hours before the briefing, House Resolution 245 (H.Res.245) was introduced by Representative Joseph D. Morelle (D-NY-25). The resolution recognizes Sjögren’s as a serious and systemic autoimmune disease and officially confirms April as Sjögren’s Awareness Month. This strong show of support by Representative Morelle gave even greater weight to the message we brought to Washington during our congressional briefing: Sjögren’s disease and the autoimmune disease crisis in this country cannot be ignored, and that research and education must be prioritized and funded. Additionally, this resolution will be a key reference document for policymakers working to promote better understanding of Sjögren’s.
Please show your appreciation to Representative Morelle for championing Sjögren’s disease awareness! Submit a message of thanks via our online form and we will share with Representative Morelle. You can also reach out directly to his office —scroll to the bottom of the blog post to learn how.
Autoimmune diseases affect up to 50 million Americans, and that number continues to rise. Yet despite the burden these diseases cause, public understanding, health education, research, and federal investment have lagged far behind, especially for Sjögren’s. Sjögren’s remains largely misunderstood, even within the medical community. It’s still too often seen as a minor nuisance, rather than the complex, systemic, and life-altering disease it truly is!
The congressional briefing was a formal opportunity to build awareness about Sjögren’s, share autoimmune disease patient perspectives, emphasize the impact and overlap of autoimmune diseases, and to highlight the need for critical research directly with the people who shape federal health priorities. We were joined by a powerful lineup of experts and leaders in research, public health and clinical care.
Dr. Vicki Shanmugam, Director of the NIH’s newly established Office of Autoimmune Disease Research, provided insight into the national strategy to better coordinate autoimmune disease research. She emphasized the Congressional directives guiding their work: developing a comprehensive NIH-wide strategic research plan, identifying emerging areas of innovation, fostering collaboration across Institutes and Centers, evaluating the current research portfolio, and improving data infrastructure through a centralized, publicly accessible research repository.
Dr. Dan Wallace, a renowned rheumatologist and longtime Sjögren’s and lupus advocate, explained how Sjögren’s frequently overlaps with other autoimmune diseases, especially lupus. He stressed the importance of better diagnostic tools and highlighted how co-occurring autoimmune diseases often delay treatment and worsen outcomes. He called for more inclusive, multi-disease research, as learning more about these diseases will aid in diagnosis, management, treatment, and development of therapies.
Dr. Stacie Bell, Chief Clinical Research Officer at Lupus Therapeutics, the clinical affiliate of the Lupus Research Alliance, talked about the clinical trial landscape and the need for innovation. Drawing from her professional and personal experience, she highlighted barriers to participation, like lack of provider awareness and infrastructure, and stressed the importance of making trials more inclusive, accessible, patient-centered, and part of standard of care.
Janet Church, President and CEO of the Sjögren’s Foundation, and Sjögren’s patient, spoke from the heart about the very real challenges the Sjögren’s community faces, including lack of awareness about the disease. She asked the audience to acknowledge if they had heard of Sjögren’s, and only 20% of the people raised their hand. Janet then presented details about the disease and what it is like to live with the disease, including the frustration many patients feel after years of searching for answers, only to face long delays in getting a diagnosis. She talked about the financial toll the disease can take, from medical expenses to lost income, and how difficult it is to manage symptoms that affect nearly every part of the body and every aspect of daily life. Janet also spoke about the emotional weight that comes with the disease itself and how patients feel misunderstood or overlooked, even by healthcare providers.
Janet stressed that Sjögren’s isn’t just about dry eyes and dry mouth, a common misunderstanding. It’s a complex, systemic disease that causes profound fatigue, dryness throughout the body, pain, cognitive dysfunction (like brain fog), neuropathies, organ damage, gastrointestinal issues, and increased risk for lymphoma. Despite Sjögren’s disease affecting more than 4 million people, there are still no FDA-approved systemic therapies for the disease and research funding and public awareness lag far behind other autoimmune diseases.
We didn’t just bring challenges to the congressional briefing but highlighted and pushed for solutions. The Sjögren’s Foundation is proud to take an active role in two major research initiatives with the Foundation for the NIH, and stressed the importance of continued funding for these research programs: The Accelerating Medicines Partnership/Autoimmune & Immune-Mediated Diseases (AMP®AIM) project which is exploring rheumatoid arthritis, lupus, psoriatic arthritis, and Sjögren’s, studying each condition individually and collectively to uncover shared mechanisms and differences; and the soon-to-be-launched Sjögren’s Biomarkers Consortium, which aims to identify biomarkers that could transform diagnosis and treatment. Our involvement in these partnerships helps ensure that Sjögren’s is represented in cutting-edge research driving progress across autoimmune and rheumatic diseases.
Throughout the briefing, we made clear what’s needed from Congress to truly move the needle on Sjögren’s and autoimmune disease research. We urged members to:
- Continue learning about autoimmune disease and the patient experience.
- Increase federal funding for autoimmune disease research, especially for diseases like Sjögren’s that have long been underfunded and overlooked.
- Fund the Office of Autoimmune Disease Research’s upcoming strategic plan to advance autoimmune research support and develop better diagnostic tools.
- Encourage research into overlapping diseases together to improve efficiency and accelerate understanding, diagnosis, treatment.
The House Resolution and the congressional briefing are both important and provide an opportunity to represent the voice of patients, but it’s just the beginning. As changes occur at the Department of Health and Human Services, the Sjögren’s Foundation will continue advocating every day for the needs of our patient community. We are committed to ensuring that Sjögren’s stays on the radar of policymakers, so Sjögren’s research continues, and we are committed to educating healthcare leaders about this disease and the true impact on patients living with the disease.
We encourage you to take a moment to thank Representative Morelle for his leadership and support. Rep. Morelle’s office was so moved by the support and feedback they received for leading the resolution last Congress (H.Res.1094). It certainly played a role in him leading our new resolution this Congress (H.Res.245).
Here’s how you can reach him:
- Call his office directly: (202) 225-3615
- Use the sample message below as a guide, but feel free to personalize your message. Sharing your own story or perspective can make an even greater impact when contacting your member of Congress.
- Thank you for introducing a congressional resolution on Sjögren’s disease! Your leadership helps bring much-needed awareness to this disease and the challenges patients face. Your support makes a meaningful difference.
- Contact his office on social media
- Use the sample message below as a guide, but feel free to personalize your message.
- Thanks for supporting Sjögren’s disease and increased awareness and research. It means so much to me and others battling Sjögren’s.
- Reach out on Twitter/X or tag in your message: @RepJoeMorelle (https://x.com/RepJoeMorelle)
- Reach out on Facebook or tag in your message: https://www.facebook.com/RepJoeMorelle
- Reach out on Instagram or tag in your message: https://www.instagram.com/repjoemorelle
On March 25, 2025, the Sjögren’s Foundation, Lupus Therapeutics, and the Office of Autoimmune Disease Research (OADR-ORWH) represented the voices of millions on Capitol Hill. To honor Autoimmune Disease Awareness Month, the Sjögren’s Foundation hosted a congressional briefing to educate members of Congress and their staff about the rise in autoimmune diseases and the urgent need for greater recognition, research investment, and better support for patients living with Sjögren’s disease and other chronic conditions such as lupus. The briefing was titled Chronic Disease Burden: Sjögren’s, Lupus, and the Autoimmune Crisis.
The timing of the event couldn’t have been more powerful. Less than 24 hours before the briefing, House Resolution 245 (H.Res.245) was introduced by Representative Joseph D. Morelle (D-NY-25). The resolution recognizes Sjögren’s as a serious and systemic autoimmune disease and officially confirms April as Sjögren’s Awareness Month. This strong show of support by Representative Morelle gave even greater weight to the message we brought to Washington during our congressional briefing: Sjögren’s disease and the autoimmune disease crisis in this country cannot be ignored, and that research and education must be prioritized and funded. Additionally, this resolution will be a key reference document for policymakers working to promote better understanding of Sjögren’s.
Please show your appreciation to Representative Morelle for championing Sjögren’s disease awareness! Submit a message of thanks via our online form and we will share with Representative Morelle. You can also reach out directly to his office —scroll to the bottom of the blog post to learn how.
Autoimmune diseases affect up to 50 million Americans, and that number continues to rise. Yet despite the burden these diseases cause, public understanding, health education, research, and federal investment have lagged far behind, especially for Sjögren’s. Sjögren’s remains largely misunderstood, even within the medical community. It’s still too often seen as a minor nuisance, rather than the complex, systemic, and life-altering disease it truly is!
The congressional briefing was a formal opportunity to build awareness about Sjögren’s, share autoimmune disease patient perspectives, emphasize the impact and overlap of autoimmune diseases, and to highlight the need for critical research directly with the people who shape federal health priorities. We were joined by a powerful lineup of experts and leaders in research, public health and clinical care.
Dr. Vicki Shanmugam, Director of the NIH’s newly established Office of Autoimmune Disease Research, provided insight into the national strategy to better coordinate autoimmune disease research. She emphasized the Congressional directives guiding their work: developing a comprehensive NIH-wide strategic research plan, identifying emerging areas of innovation, fostering collaboration across Institutes and Centers, evaluating the current research portfolio, and improving data infrastructure through a centralized, publicly accessible research repository.
Dr. Dan Wallace, a renowned rheumatologist and longtime Sjögren’s and lupus advocate, explained how Sjögren’s frequently overlaps with other autoimmune diseases, especially lupus. He stressed the importance of better diagnostic tools and highlighted how co-occurring autoimmune diseases often delay treatment and worsen outcomes. He called for more inclusive, multi-disease research, as learning more about these diseases will aid in diagnosis, management, treatment, and development of therapies.
Dr. Stacie Bell, Chief Clinical Research Officer at Lupus Therapeutics, the clinical affiliate of the Lupus Research Alliance, talked about the clinical trial landscape and the need for innovation. Drawing from her professional and personal experience, she highlighted barriers to participation, like lack of provider awareness and infrastructure, and stressed the importance of making trials more inclusive, accessible, patient-centered, and part of standard of care.
Janet Church, President and CEO of the Sjögren’s Foundation, and Sjögren’s patient, spoke from the heart about the very real challenges the Sjögren’s community faces, including lack of awareness about the disease. She asked the audience to acknowledge if they had heard of Sjögren’s, and only 20% of the people raised their hand. Janet then presented details about the disease and what it is like to live with the disease, including the frustration many patients feel after years of searching for answers, only to face long delays in getting a diagnosis. She talked about the financial toll the disease can take, from medical expenses to lost income, and how difficult it is to manage symptoms that affect nearly every part of the body and every aspect of daily life. Janet also spoke about the emotional weight that comes with the disease itself and how patients feel misunderstood or overlooked, even by healthcare providers.
Janet stressed that Sjögren’s isn’t just about dry eyes and dry mouth, a common misunderstanding. It’s a complex, systemic disease that causes profound fatigue, dryness throughout the body, pain, cognitive dysfunction (like brain fog), neuropathies, organ damage, gastrointestinal issues, and increased risk for lymphoma. Despite Sjögren’s disease affecting more than 4 million people, there are still no FDA-approved systemic therapies for the disease and research funding and public awareness lag far behind other autoimmune diseases.
We didn’t just bring challenges to the congressional briefing but highlighted and pushed for solutions. The Sjögren’s Foundation is proud to take an active role in two major research initiatives with the Foundation for the NIH, and stressed the importance of continued funding for these research programs: The Accelerating Medicines Partnership/Autoimmune & Immune-Mediated Diseases (AMP®AIM) project which is exploring rheumatoid arthritis, lupus, psoriatic arthritis, and Sjögren’s, studying each condition individually and collectively to uncover shared mechanisms and differences; and the soon-to-be-launched Sjögren’s Biomarkers Consortium, which aims to identify biomarkers that could transform diagnosis and treatment. Our involvement in these partnerships helps ensure that Sjögren’s is represented in cutting-edge research driving progress across autoimmune and rheumatic diseases.
Throughout the briefing, we made clear what’s needed from Congress to truly move the needle on Sjögren’s and autoimmune disease research. We urged members to:
The House Resolution and the congressional briefing are both important and provide an opportunity to represent the voice of patients, but it’s just the beginning. As changes occur at the Department of Health and Human Services, the Sjögren’s Foundation will continue advocating every day for the needs of our patient community. We are committed to ensuring that Sjögren’s stays on the radar of policymakers, so Sjögren’s research continues, and we are committed to educating healthcare leaders about this disease and the true impact on patients living with the disease.
We encourage you to take a moment to thank Representative Morelle for his leadership and support. Rep. Morelle’s office was so moved by the support and feedback they received for leading the resolution last Congress (H.Res.1094). It certainly played a role in him leading our new resolution this Congress (H.Res.245).
Here’s how you can reach him: