An informal alliance of European patient advocacy organizations 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 seeking appropriate treatment and expanding their understanding of this crippling disease.
During the 2019 SANE-Sweden PANS conference, the alliance agreed to formally organize as EXPAND, The European Immuno-neuropsychiatric Association. EXPAND and The EXPAND Foundation was registered in April 2020. The founding members were Norway, Sweden, Finland, Denmark, Italy, the Netherlands, Ireland, United Kingdom, Serbia, Croatia, Germany and Poland. We have since added the Czech Republic and Cyprus.
To amplify our shared messages to advance our shared goals, EXPAND will collaborate and coordinate with other organizations such as the the Alex Manfull Memorial Fund, ASPIRE, the Foundation for Children with Neuroimmune Disorders, Mending Minds, PACE Foundation, PANDAS Network, PANS Australia and New Zealand Advocacy and Support Inc. and PRAI (Pediatric Research & Advocacy Initiative).
A priority of the association was to establish a Scientific and Medical Advisory Board (SMAB) that could advise the association regarding its initiatives and provide expertise and guidance to clinicians throughout Europe. You can meet our SMAB here.
The members of the association gave a great deal of consideration to the naming of the organization due to concerns that current names and acronyms failed to accurately describe this/these insufficiently understood disorders. They wanted to avoid terms that would quickly become outdated given that science on the subject was progressing. For example, it was important to members that it not be described as a solely pediatric disease or predominantly occurring with an acute-onset.
In a single word, EXPAND captures the energy and intention of what the association and foundation will strive to achieve. It leverages the direct and associated meanings of the word while simultaneously hinting at its origins in the acronyms PANS/PANDAS.
Direct Meaning of EXPAND
Words related to EXPAND
Bolster, widen, broaden, swell, enlarge, increase, spread, develop, open, grow, extend, thicken, lengthen, unfurl, protract, distend, magnify, dilate, stretch.
Words related to “ex”
Previous, past, sometime, old, once, early, preceding, earlier, late, prior, departed, retiring, last, departing, latter, bygone, over.
<To make the lack of knowledge of, and suffering from immuno-neuropsychiatric disorders a thing of the past.>
E – to reference ENCEPHALOPATHY and EUROPE
EX – to reference working to make the suffering a thing of the past
P – to reference POST
PAN – to reference PANS
A – to reference AUTOIMMUNE
AND – to reference PANS AND PANDAS
PAND – to reference PANDAS
D – to reference DISEASE