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Treating rare disease, caring for individuals
The rare autoimmune disease journey is rarely straightforward, but diagnosis can be a turning point. With timely collaboration, a person experiencing rare disease and their supportive care team can explore more opportunities to face treatment with confidence.
SPAARK, Strengthening Partnerships to Advance Autoimmune Rare Disease Knowledge, is an alliance of 10 organizations working together to improve early recognition of rare disease and shorten the path to diagnosis. We honor the individual nature of living with and treating rare conditions by reinforcing referral pathways, evolving clinical knowledge and moving rare care beyond status quo.
The challenge we share
No one living with a rare disease should have to wait years for answers. By and uniting the rare disease community around better research and resources, SPAARK aims to reduce the time to diagnosis by 50% by 2036. Our partners are advancing rare care innovation to accelerate recognition of Thyroid Eye Disease, IgG4 -related disease, and other rare diseases so people experiencing them can access the widest possible range of treatment options.
With an approach rooted in shared knowledge, patients, caregivers and providers can bypass delays, test old assumptions about the role of steroids, and develop care plans that reflect the needs of each person.
The number of years patients often wait for an accurate diagnosis
Rethink Rare Care
Diagnosing and treating rare autoimmune diseases can’t rest on routine. Rethink Rare Care encourages proactive, ongoing collaboration between people with these conditions and clinicians to reconsider the right action for rare care.
Knowing that breakdowns in information often complicate this journey, we are gathering insights from the rare disease community to create new resources from their lived experience and expertise. In the future we envision, these tools will help enable more connected care, informed patient-provider conversations about the impacts of prolonged corticosteroid use, and the role of targeted therapy in long-term care tailored to each individual.
Built around people
When shared knowledge moves freely within the rare disease community, the journey gets personal.
Knowing the patterns
The knowledge patients and caregivers have about symptoms and their effect on daily life keeps the focus of treating these complex conditions on individual needs.
Pushing for answers
Patient organizations encourage patients to ask questions and advocate for treatment options centered around their unique experience of rare disease.
Connecting to care
Clinicians’ recognition of patterns and disease presentation can shorten a patient’s path to visiting a specialist, arriving at a diagnosis, and getting care that works for them.
Where we’re headed
SPAARK is building a future where people with rare diseases and providers confidently discuss changes in disease activity to explore more targeted treatment options. As we continue to grow in our partnership, watch for updates about our mission to accelerate diagnosis and support informed decisions about rare care.