Non-Profit Status

EXPAND, the European Immuno-neuropsychiatric Association* and the EXPAND Foundation are organized as non-profit entities. The PDF of the Articles of Incorporation for the association and the foundation can be found below.  Each document is in Dutch and English. Links are also provided below to where our Policy Plans and Financial Reports will be located. The EXPAND Foundation is applying for its ANBI status.

* Also known as EXPAND and/or the EXPAND Association

Objective

Please find the objectives of the association and the foundation outlined on our Vision, Mission and Goal page.

Achievements During our Start-up Phase

The association and the foundation are newly-formed organizations. We are pleased to share the following accomplishments to date:

• We have organized  Europe’s informal and formal patient advocacy organizations into an European-wide association with a working Board.
• We have established a professional Scientific  and Medical Advisory Board (SMAB) consisting of leading researchers and practitioners focused on PANS/PANDAS/BGE and related diseases and disorders. The SMAB is critical to the success of EXPAND. It will provide the association and the foundation with expertise and advise on these conditions as EXPAND and its members advocate for our patient population; provide input on general strategy where applicable; broaden the network of professionals globally who are researching and treating PANS/PANDAS/BGE and related diseases and disorders; give credence to EXPAND’s initiatives with their expert advice; and launch their own initiatives including collaborating on grants and hosting webinars and other educational initiatives.
• We have initiated research projects that investigate both the cause of immune behavior and neuropsychiatric disorders such as PANS/PANDAS/BGE and explore possible treatments.
• We have taken first steps to establish a patient registry.
• We have initiated conversations that are helping to raise immune behavior and neuropsychiatric disorders such as PANS/PANDAS/BGE as a topic that extends beyond the national level to the European level.
• We have developed connections and positive relationships with leading advocates and advocacy organizations outside of Europe including ASPIRE, PANDAS Network, The Alex Manfull Memorial Fund, The Foundation for Children with Neuroimmune Disorders, PRAI,  Northwest PANDAS/PANS Network, and Mending Minds.

Future Projects:

The newly-formed Board of the association will develop its detailed long and short-range plan, but in the meantime, the following projects have been identified as priorities:

• To promote additional research.
• To encourage the development of a pan-European Diagnostic Criteria & Treatment Plan for PANS/PANDAS/BGE.
• To take initial steps to create true expertise centers.
• To inventory existing databases and establish an European Patient Registry.
• To use centralized instruments and combined programs to support the national patient groups, associations and individual advocates in their efforts to support researchers, practitioners, patients and families across Europe.
• To welcome additional members to the association.

Fundraising:

The association can raise funds through memberships, donations, gifts, contributions, admission fees, subsidies, inherited property, bequests, legacies, gifts and other income and revenue.

The foundation can also hold fundraising events, accept allowances, gifts,  and donations.  Additionally, the foundation can accept remunerations and contributions for services provided.

Remuneration Policies:

EXPAND, The European Immuno-neuropsychiatric Association

• The Association is not entitled to distribute any profit among its members.
• The members of the Board shall not receive an remuneration for their duties. Expenses incurred by a Board Member in the course of the performance of their duties shall be compensated.
• There are no paid employees.

The EXPAND Foundation

• Only the Foundation can dispose of its capital.
• The Foundation holds the assets which are reasonably necessary for the continuity of the provided activities on behalf of the Foundation’s object.
• The costs of fundraising and management of funds should be in reasonable proportion to the expenses on behalf of the Foundation’s objects.
• The members of the Board shall not receive an remuneration for their duties. Expenses incurred by a Board member in the course of the performance of their duties shall be compensated.
• There are no paid employees.

Board Governance and Board Members:

EXPAND, The European Immuno-neuropsychiatric Association

The Association Board is elected by the General Assembly at the Association’s General Meeting. The General Assembly is comprised of representatives from  informal and formal national patient advocacy organizations and associations. These organizations advocate for the interests of this patient group and their families.

You can find our members (the national patient advocacy organizations) here.

Meet the Association Board members here.

EXPAND Scientific and Medical Advisory Board (SMAB) 

The SMAB is critical to the association’s efforts to elevate immune behavior and neuropsychiatric disorders such as PANS/PANDAS/BGE to the European level.  It will establish its own goals and objectives in alignment with the overarching goals and objectives of the association. In addition to helping to stimulate and collaborate on research,  the SMAB will be able to inform other practitioners about immune behavior and neuropsychiatric disorders such as PANS/PANDAS/BGE and related conditions and broaden the network of professionals interested research and treat these conditions within Europe and globally.

Meet the SMAB here.

SMAB members can be contacted via this email: smab.coordinator@expand.care

The EXPAND Foundation – Board

The Board of the EXPAND Foundation is newly formed.  Board members are responsible for helping to raise funds; manage resources; represent the foundation, advocate on its behalf, and elevate its profile. Our Board is multi-national and includes the perspectives of the medical and mental health fields, corporate business management, non-profit management, marketing, and AI. The EXPAND Foundation plans to recruit an Advisory Board in the future.

Meet the Foundation Board members here.

Board members can be contacted via:  communications@expand.care

The EXPAND Foundation – Advisory Board

Future goals include establishing an Advisory Board to the Foundation Board. Advisory Board members TBA.

Financial Reports:

Financial Reports will be prepared by A.C.M. Onderwater Administraties & Belastingen, reviewed by the Board and made available here.

Annual Reports

Annual Reports will be found  here.

Policy Plans

Policy Plans will be found here

Articles of Incorporation

The European Immunopsychiatric Association

The EXPAND Foundation