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LUPUS EUROPE Trustees by November 2013

Kirsten Lerstrøm
Mail: kirsten@lupus-europe.org

Function description:
Responsible for the overall good order and welfare of the charity. Ensures that collectively Trustees function correctly, that everyone is able to contribute fully during meetings that all items of the Agenda are discussed and effective decisions are made. The Chair Is expected to provide leadership and must also know the rules for the conduct of meetings. The Chair will oversee the Strategic Plan and Annual Budget and in as much facilitate its construction and control with other Trustees. The Chair is the figurehead of the organisation which will often include representing the organisation at outside meetings and attending public functions.

Diagnosed with SCLE 1989

2005 – appointed Delegate of Lupus DK
2007 – appointed Observer to LUPUS EUROPE Board of Trustees
2008 – elected Trustee
2009 – elected Vice-Chair

M Sc (Econ) 1987 of Copenhagen Business School

Presented on behalf of LE to a wider audience, main events:
2009 – Living with Lupus, EULAR, Copenhagen
2010 – Living with Lupus, World Congress of Lupus, Vancouver
2010 – Living with Lupus, EULAR, Rome
2011 – Living with Lupus, European Lupus Meeting, Porto
2011 – Living with Lupus, EULAR, London
2012 – Living with Lupus, Global Patients Congress, IAPO, London
2012 – Other RMDs – Lupus, EULAR, Berlin

Represented LUPUS EUROPE at general assembly meetings of:
PARE – People with Arthritis and Rheumatism in Europe
EULAR Task Force on SLE – special committee on lupus within the specialist organization of rheumatoid diseases
EPF – European Patients’ Forum
IAPO – International Alliance of Patients Organizations

Blanca Rubio
Mail: blanca@lupus-europe.org

Function description:
Understudies the Chair and is responsible for development issues including some individual projects. Keeps contact with Stakeholders and other partners as necessary. Co-ordinates with the Chair for outside representation.

Has been Trustee to LUPUS EUROPE since 2009.

Anne Charlet
Mail: Anne@lupus-europe.org

Function description:
Responsible for the calling of Trustee Meetings and the Annual Council Meeting, for drawing up the Agenda and location of meetings in conjunction with the Chair and for producing accurate and timely minutes of these Meetings. Is in charge of the communication to members of current important issues by distributing relevant information by mail. Works with the Membership Manager in encouraging and supporting groups. Produces Caring & Sharing and the LUPUS EUROPE NewsFlash. Supports fellow Trustees as necessary.

2012 – appointed delegate of Lupus France
2012 – nominated for Secretary

Mother to a daughter diagnosed with SLE 2011

30 years experience from marketing and communications in four different countries
Product Marketing Manager B2B Software solutions, globally
Fluent in English (US), French and German
B Sc (Math, German)

Katharine Wheeler
Mail: Katharine@lupus-europe.org

Responsible for specifically assigned projects and attending European events as a Lupus Europe representative.

Involved in work for the Belgian French-speaking Lupus Association since 2009. Delegate at Lupus Europe conventions from 2010-2014.

2011 - Co-opted Lupus Europe representative at the EPF AGM.
2014 - Co-opted Lupus Europe representative at the IAPO congress.
2014 - Co-opted Lupus Europe representative at the EPF AGM.
2014 - Involved in EPF working groups on Access to healthcare and the definition of patient associations.
2014 - Elected to the Lupus Europe board of trustees.

Originally from Ireland, Katharine has several years work experience in English language and communication skills training for adults in a corporate setting as well as working as a French-English translator. Professional life has been put on the back burner because of multiple auto-immune diagnoses and that, along with a long family history of auto-immune disease, has led to an interest in further advancing the work of patient associations in this area.

Kirsi Myllys
Mail: Kirsi@lupus-europe.org

Function description: Responsible for Conventions and Events.

2014 – Convention Manager in Finland for the Lupus Europe Convention
2013 – presented a poster for PARE at Eular Madrid Congress
2012 – 2014 Chair of Lupus Finland
2001 – One of the founding members of Lupus Finland (SLE-yhdistys ry)

English language training and teaching for 15 years, 3 years of translating (Fi-Eng-Fi).
Voluntary work: a producer (5 productions, a theatre festival) and Chair (3yrs) of the Finn-Brit Players, an amateur English-speaking theatre group in Helsinki.
MA (English Philology, Theoretical Philosophy), Vocational Qualification in Business and Administration