EXPAND, The European Immuno-neuropsychiatric Association
EXPAND is a pan-European patient advocacy organization for children, adolescents and adults with immune-mediated, neuro-psychiatric disorders. These disorders combine neurological and/or immunological problems with psychiatric and/or behavioral symptoms.
A Brief History
The association originated as an informal alliance of European patient advocacy organizations which came together in 2018 to respond with one voice to a medical journal article concerning PANS/PANDAS treatment. In the ensuing months, they continued to discuss their challenges in seeking appropriate treatment and expanding understanding of this devastating disorder.
During the 2019 SANE-Sweden PANS conference, the alliance agreed to formally organize into what became EXPAND, The European Immuno-neuropsychiatric Association. The association and The EXPAND Foundation were registered in 2020.
Members of the Association
Members of the EXPAND association are national (in)formal patient groups, patient associations and/or foundations. These organizations advocate for the interests of this patient group and their families. In naming their organizations and describing those they serve, these organizations use a variety of terms and acronyms to encapsulate these disorders including neuroimmune, immuno-neuropsychiatric, PANS (Pediatric Acute-onset Neuropsychiatric Syndromes), PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep), and BGE (Basal Ganglia Encephalitis).
Each member organization is responsible for their own membership, governance and the development of goals and objectives they choose to pursue in tandem with their involvement in EXPAND’s initiatives.
What our members do within their countries:
How EXPAND helps with those efforts:
The founding members of EXPAND are: Sweden, Norway, Finland, Denmark, UK, Ireland, The Netherlands, Italy, Poland, Germany, Serbia and Croatia. They have since been joined by the Czech Republic.
We welcome new members. Even if there isn’t an advocacy organization yet established in your country, you are welcome to contact us as an individual and we can support your efforts. Contact EXPAND at firstname.lastname@example.org regarding membership.
You can find out about Association Member Countries and their contact information here.