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Goals, Mission & Vision

Overall Goals

  1. To improve lives of people who are diagnosed with autoimmune encephalitis (AE), Rasmussen syndrome (RS)/Rasmussen's encephalitis (RE), and new onset refractory status epilepticus (NORSE), including its sub-type, febrile infection-related epilepsy syndrome (FIRES).
  2. Early diagnosis and effective treatment in these conditions
  3. Facilitate research in these conditions
  4. Establish a multi-center patient registry including patient- and caregiver reported outcomes, clinical database, improved clinical outcome measures that reflect lived experience, biorepository, EEG database, and an MRI database.
  5. Develop and maintain a website with up-to-date information for clinicians, patients, caregivers, and communities affected by these diseases.

Pilot Core goals:

ARISEN welcomes proposals that tackle the unmet needs in these conditions. These proposals will utilize the Rare Diseases Clinical Research Consortia (RDCRC) network, develop new resources, and foster collaboration.

Career Core goals:

We will train the next generation of scientists in these conditions by providing educational sessions, mentorship, access to the registry, and funding support.

Patient Advocacy Goals

In collaboration with our partner patient advocacy groups (PAGs), we will:

  • Partner together on research projects important to our PAGs
  • Build effective communication pathways to keep patients and families informed of new clinical and research developments through websites, newsletters, social media, and conferences.
  • Establish a forum to highlight patient and family voices by collecting and sharing their perspectives and priorities
  • Provide public educational programs to raise awareness of these diseases

Mission

ARISEN is dedicated to advancing research, collaboration, and patient-centered innovation to improve understanding, diagnosis, and treatment of autoimmune encephalitis (AE), Rasmussen syndrome (RS)/Rasmussen's encephalitis (RE), and new onset refractory status epilepticus (NORSE), including its sub-type, febrile infection-related epilepsy syndrome (FIRES). We unite clinicians, scientists, patients, and families to accelerate discovery, foster education, and translate breakthroughs into meaningful care for those affected by these rare and devastating neurological diseases.

Vision

We envision a world in which these diseases are detected early, with cures and treatments to empower people to recover completely.