Patients and Caregivers
Understanding Brain Inflammation from the Patient Perspective
Brain inflammation, also known as neuroinflammation, can cause a range of physical, mental health, and behavioral symptoms. Because the brain and nervous system affect every part of the body, symptoms often present systemically. This makes it difficult for patients to access good care for the root cause of the symptoms because the healthcare system is structured around specialties, or specific organ groups.
Research has begun to illustrate the connections between immune system dysfunction, brain inflammation, and mental health, but clinical care can be slow to catch up with research findings.
The challenges of getting the right diagnosis and the best possible treatment are numerous even for well-understood conditions. When the symptoms or conditions are newly researched, these barriers to accessing care are compounded.
We work with patients, researchers, and medical care providers to make the path to diagnosis, treatment, and better health outcomes easier for people impacted by brain inflammation and their families. We accomplish this by:
- Collaborating with patients as partners, not just research participants
- Connecting patients like you with clinical research studies that could most significantly impact your quality of life
- Prioritizing patient experiences, collecting patient-reported outcomes
- Making it easier to participate in clinical research
- Ensuring patients can leverage their own data, producing reports that can be shared with medical providers
Research Driven by and for Patients
We are dedicated to collecting patient-centered data using methods that are patient-tested and experience-driven. We are systemically studying more than 30 diagnoses that have overlapping symptoms to help accelerate advancements for more patients.
The ultimate goals of this work are to identify new treatments, including drug repurposing, and improve clinical trial design to be more patient-centered.
You can make a difference for families like yours struggling with the impacts of brain inflammation.
Empowering Patients and Caregivers
Chronic illnesses have been under-researched and poorly-understood due to widespread misdiagnosis, misattribution of symptoms, and poor representation in clinical research.
Many patients with mental health symptoms caused by chronic medical conditions are misdiagnosed with psychological or psychiatric illnesses. When mental health symptoms don’t resolve with traditional treatments, like SSRIs, they are labeled treatment-resistant or dismissed all together.
We are committed to changing this. We are developing a longitudinal digital health platform that helps patients and caregivers track symptoms, identify patterns, and generate reports that can be shared with healthcare providers. This empowers patients to advocate for themselves and ensures patient experiences are central to research outcomes.
A New Approach to Mental Health & Chronic Illness
We are focused on mental health because brain inflammation can cause psychological, cognitive, behavioral, and mood changes and is often missed due to gaps in diagnostic protocols and standards of care specifically for these symptoms.
Patients experience depression, anxiety, and cognitive challenges that do not improve with traditional psychiatric treatments—because the root cause is often chronic inflammation, not a mental health disorder. This connection could be the key to better health outcomes for many who have been trapped in a cycle of inflammation and mental health concerns.
By partnering with other advocacy groups and academic researchers, we are working to unify efforts, share findings, and accelerate research toward our ultimate goal of better treatments for these conditions.
Patient experiences, feedback, and stories shape our work in tangible ways every day.
It’s easy to feel isolated and alone when facing chronic illness. There is power in community, in our shared stories.
Check out a few of the patient stories that drive our passion to achieve a cure for neuroinflammatory conditions and remind us that we’re not alone.
Participate in Research
If you have one of the 30+ diagnoses we’re focused on, or suspect you do, you may be eligible to participate in clinical research! Even if your symptoms are not current, your data has the power to drive clinical research.
Family Involvement
Many conditions associated with brain inflammation are (or are suspected to be) genetic. Including at-risk siblings in research is critical to help identify potential preventive measures and risk factors for illness.
Join our Community
The Brain Inflammation Collaborative is here to change the future of care for neuroinflammatory diseases.
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Pay it Forward
Join us in building a better future for patients and families impacted by brain inflammation!
This research is underfunded, but urgently needed. Your gift today makes better diagnosis and treatment options for future patients.