LINK TO ONE OF OUR 45 MEMBER COUNTRIES FOR LOCAL SUPPORT, ADVICE AND NEWS

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  • Finland
  • Norway
  • Sweden
  • Estonia
  • Russian Federation
  • Latvia
  • Denmark
  • Lithuania
  • United Kingdom
  • Netherlands
  • Ireland
  • Poland
  • Germany
  • Belgium
  • Czech Republic
  • Ukraine
  • Slovakia
  • Luxembourg
  • Moldova, Republic of
  • Austria
  • France
  • Switzerland
  • Romania
  • Slovenia
  • Croatia
  • Serbia
  • Bosnia & Herzegovina
  • Bulgaria
  • Italy
  • Macedonia, the Former Yugoslav Republic of
  • Spain
  • Greece
  • Israel

Our Vision

To improve quality of lives of patients and families

 

Our goals

1. To involve and engage members; by actively supporting and empowering through involving them in projects, future planning and representation at internal and external meetings.

2. Get a fair share of resources in global, national and local healthcare decisions through cohesive working with clinicians, pharmaceutical representatives and healthcare providers to create sustainable infrastructures in countries with treatment guidelines, access to education and training for clinicians, disease registries and a network of centres of care.

3. To be recognised as a trusted stakeholder known for its transparency, integrity and independence that brings the voice of the patient to the table.

4. Knowledge management to connext, signpost and disseminate: to be a central portal receiving and identifying information, that is collated, precised and then disseminated using different communication channels, to our network of members and stakeholders in an appropriate and timely manner.

5. Meeting unmet needs supporting research and drug development through listening to patients, collaborating with and supporting clinicians, developing patient related outcomes and explore different models of drug development and patient access.

What are the aims & objectives?

To collect information on the latest developments in the understanding, management and treatment of Gaucher Disease and to disseminate such information to all parties who have an interest in Gaucher Disease and other similar disorders.

To provide information, support, guidance and encouragement to groups of individuals representing Gaucher patients throughout the world.

To represent the interests of Gaucher patients to European and International organisations and bodies and to ensure that the voice of the Gaucher Patient is heard at all times.

To encourage and promote scientific and medical research into Gaucher Disease and improved therapeutic approaches and to seek to ensure all such research recognises the centrality of the Gaucher Patient.

To work with the medical and scientific community to define priorities in the understanding of Gaucher Disease, its management and treatment.

To work with, facilitate, support and encourage the activities of the European Working Group on Gaucher Disease (EWGGD) and other organisations or working groups with similar objectives.

To be a forum to address ethical issues arising from the study of Gaucher Disease, its management and treatment.

To ensure that appropriate treatment is available to all patients with Gaucher Disease who require treatment regardless of race, creed, colour ethnic origin or national or religious background.