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EGA Board Membership Opportunities

10 April 2018

This year the EGA will be holding elections to form its new board ahead of the biennial members meeting in Genoa, Italy.  There are eleven vacancies to fill.  We are writing to you now to give you time to consider whether you would like to join the board of the EGA and to think about what this would involve...

Board member responsibilities

Each EGA board member is responsible for a small cohort of member countries; they are the key contact for that member association to approach with regards to: country issues; regional meetings; relations with industry.

The EGA board meet at least three times face-to-face annually, with short teleconference calls between these meetings to stay in touch and manage projects.  A representative from the board will also attend external meetings which include: EURORDIS meetings (annual members meeting; Council for European Rare Disease Federations (CEF); Summer School), WORLD symposium in the USA and regional patient meetings.

The EGA has a full and exciting work programme which directors/CEO take the lead on for specific project areas, with support from board colleagues, the EGA office, and working groups made up of EGA member association representatives where needed. 

The current work programme includes...

Going Global: working with an external consultant on the development of a strategic plan for the EGA to transition into a global organisation.

 

Humanitarian Aid: maintaining a patient database; working with pharmaceutical companies to develop their charitable access programmes and the development/improving clinical infrastructure and management guidelines in countries around the world.

 

Supporting EGA members: helping patients to improve their daily lives and minimising GD related stress and difficulties by sharing Best Practices; to support members in capacity building and help members strengthen their knowledge in patient advocacy and to grow and act for change in their countries; strengthen the importance of the EGA’s Code of Ethics and support members in developing their own code of practice or adopting the EGA´s Code in order to regulate their communication with industry.

 

Supporting new groups/new members and developing national organisations: provide support and advice to patient groups and countries/regions to improve and develop patient and family support in their countries.

 

Research & treatment management: improve the basic knowledge of young doctors about Gaucher disease and their ability to diagnose Gaucher patients and educate them about where to refer patients; identify unmet medical and non-medical needs of patients and families and seek to encourage research in these areas in partnership with clinicians and the pharmaceutical companies.

 

Public relations: develop and maintain the existing EGA website, including an EGA library; explore other social media options to reach more patients, associations and other stakeholders; develop and promote International Gaucher Day; develop an independent basic information booklet on Gaucher Disease on the website that can be downloaded as a PDF.

 

EWGGD: board representation on the EWGGD to input the perspective of the patients/patient groups; pre-organisation of the EGA’s biennial meetings and EWGGD.

 

If you do want to put yourself forward to join the EGA board you must:

  • represent a member country of the EGA; and
  • complete the attached ‘Candidate Application Form’
  • include a short written presentation (no more than 500 words) to support your application

 

The form must be completed and signed by 4 additional people:

  • your association’s chairperson, to support your application
  • one representative from another member country, to propose your application
  • two representatives from two other member countries, to second your proposal

 

According to our constitution, existing board members who are standing for re-election must be nominated by one full member.

 

The closing date for all nominations is Friday 22 June 2018.

 

If there are no more than eleven nominations:

These applicants will automatically be granted board membership and we will send confirmation of the new board to all members by Friday 29 June 2016.  The new board will not take office until after the conclusion of the EGA’s biennial meeting on Tuesday 16 October 2018 in Genoa, Italy. 

 

If there are more than eleven nominations:

The written presentations submitted by each candidate will be sent out, together with a ballot paper with the names of all nominated applicants, to our members by Friday 29 June 2018 together with specific information on how to vote.  The deadline for this vote will be 28 September 2018.

 

For more information...

If you would like to find out more about what being on the board would involve, including the time and travel commitments, please contact any existing board member:

 

Vesna Aleksovska (Macedonia) vesna@gaucheralliance.org

Biljana Jovanovic (Serbia) biljana@gaucheralliance.org

Anne-Grethe Lauridsen (Denmark) anne-grethe@gaucheralliance.org  

Jeremy Manuel (UK) jeremy@gaucheralliance.org

Pascal Niemeyer (Germany) pascal@gaucheralliance.org

Manjit Singh (India) manjit@gaucheralliance.org  

Jasenka Wagner (Croatia) jasenka@gaucheralliance.org

Kate White (Canada) kate@gaucheralliance.org

Sandra Zarina (Latvia) sandra@gaucheralliance.org

Irena Žnidar (Slovenia) irena@gaucheralliance.org

 

Alternatively, our Chief Executive Officer Tanya Collin-Histed would be happy to talk with you about the work of the EGA and the role of a board member.  Tanya can be contacted on +44 (0)1453 549231 or by email tanya@gaucheralliance.org

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