The European Immuno-neuropsychiatric Association

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:

  • Raise awareness of PANS/PANDAS /BGE and related immuno-neuropsychiatric conditions.
  • Support the medical and mental health communities in their efforts to address the needs of those with these conditions.
  • Advocate for and expand access to care, including the diagnosis and treatment of PANS/PANDAS/BGE and related immuno-neuropsychiatric conditions.
  • Assist patients, families and/or caregivers access information and services they need.
  • Organize online support groups with peer-to-peer sharing and support.
  • Organize in-person events and/or meetings.

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 communications@expand.care regarding membership.

Member countries may be contacted via their contact information provided below:

Cyprus: Autism Support Famagusta

Website

Facebook page

Denmark: PANDAS/PANS Foreningen Denmark

Website

Facebook page

Finland: PANS/PANDAS Suomessa

Facebook page

Germany: PANDAS/PANS Deutschland

Facebook page

Ireland: PANDAS Ireland

Facebook page

Italy: PANDAS Italia ODV

Website

Facebook page

Netherlands: PANS/PANDAS Nederland Patientenvereniging

Facebook page

Norway: SANE Norge

Website

Facebook page

Poland: PANDAS, PANS, AUTYZM – Grupa

Facebook page

Serbia: PANDAS PANS Srbija – neuroimuno oboljenje

Facebook page

Serbia, Croatia, Bosnia and Herzegovina: nAUkaTIZAM

Website

Facebook page

Spain: PANS/PANDAS España

Facebook page

Sweden: SANE Sweden

Website

Facebook

United Kingdom: PANS/PANDAS UK

Website

Facebook page

Member pages to be added: Czech Republic, Croatia