Country

England & Wales

Charity number

1192011

Status

Registered

Registered

Oct. 27, 2020

Legal form

Charitable company

Address

Contact

Phone

01453796402

Email

[email protected]

Website

gaucheralliance.org

Activities

The IGA is an international umbrella group representing the interest of Gaucher patients and those of non-for-profit Gaucher patient groups as well as rare disease groups throughout the world.

Objects: The Objects For Which The Company Is Established Are The Relief Of Sickness And The Preservation Of Health Amongst People Suffering From The Rare Genetically Inherited Condition Of Gaucher Disease Wherever They Are In The World ("Objects") And In Doing So The Company Will: 1.1 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;1.2 Provide Information Support Guidance And Encouragement To Groups Of Individuals Representing Gaucher Patients Globally;1.3 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.1.4 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.1.5 Work With The Medical And Scientific Community To Define Priorities In The Understanding Of Gaucher Disease Its Management And Treatment.1.6 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.1.7 Be A Forum To Address Ethical Issues Arising From The Study Of Gaucher Disease 1.8 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; And1.9 Carry Out Any Other Activities That Advance The Objects.

Classification

How

Provides Advocacy/advice/information, Acts As An Umbrella Or Resource Body

What

Education/training, The Advancement Of Health Or Saving Of Lives

Who

Other Charities Or Voluntary Bodies, Other Defined Groups, The General Public/mankind

Areas of operation

Country

Albania, Argentina, Australia, Austria, Belgium, Bosnia And Herzegovina, Botswana, Brazil, Bulgaria, Canada, China, Colombia, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, India, Israel, Italy, Japan, Jordan, Kazakhstan, Latvia, Lithuania, Luxembourg, Macedonia, Mexico, Moldova, Mongolia, Morocco, Mozambique, Netherlands, New Zealand, Norway, Pakistan, Paraguay, Poland, Portugal, Romania, Russia, Slovakia, Slovenia, South Africa, Spain, Sweden, Switzerland, Thailand, Tunisia, Turkey, Ukraine, United States

Region

Throughout England And Wales

Finances

Trustees

Nearby

• Chance (UK) Limited 0.0 mi
• Education Partnerships Africa 0.0 mi
• National Hearing Voices Network 0.0 mi
• Pump Aid 0.0 mi
• Club 106 Community Project 0.0 mi

Data

• JSON
• Markdown
• CSV