Our kids can make a huge difference for the promotion of an unknown condition like Sickle Cell!
The Association of Sickle Cell sufferers of Yorkshire and Africa and Basic Information (ASYABI) was founded in Leeds in the United Kingdom in June 2008. It is aRegistered Charity led by volunteers and people affected by Sickle Cell Anaemia and Thalassaemia aiming to provide self-support and information, advice and other helps needed to people and their families affected by sickle cell and thalassaemia. Support and advice is provided by telephone, email and through home visits. ASYABI work with the support from Health Care professionals to ensure that individuals with sickle cell and thalassaemia get the optimum service from health, education or social care. Since 2009, our self-help patient group also known as “ASYABI”, has been able to provide conferences, leaflets, etc. on this issue to raise awareness of sickle cell disorder in Leeds and Yorkshire.
Since the end of 2008, we have been offering annual public conferences on this condition to encourage the change of perception by sharing experiences for a self-believe to improve their live. Our work includes visiting other suffers who suffer from social exclusion and the added stigma attached to our chronic and incurable illness.
ASYABI CONFERENCE 2010 IN LEEDS
Our aims and Objectives:
• To promote the relief of people suffering from sickle cell and thalessaemia disorders.
• To advance education of the public in order to increase knowledge and understanding of sickle cell and thalassaemia disorders.
• To promote research into the nature, prevalence treatment and the prevention of sickle cell and thalassaemia disorders and disseminate and publish the useful results thereof.
1- Collaborate with other associations, public and private health system infrastructures in the UK and Europe that are fighting against sickle cell and thalassaemia and non-endemic illnesses through information exchanges, symposia and conferences.
2- Developing partnerships with other public and private organisations in the UK to reach and fulfil our aims and objectives.
3- To help other sickle cell projects and associations in Africa and in other developing countries.
4- To raise funds and to invite and receive contributions provided that in raising funds the Committee shall not undertake any substantial permanent trading activities;
5- To employ such staff (who shall not be members of the Committee) as are necessary for the proper pursuit of the aims of the Group as above;
6- To co-operate with other voluntary and community based organisations and authorities and agencies operating in furtherance of the aims of the group or of similar charitable purposes and to exchange information and advice with them;
7- To establish or support any charitable trusts, associations or institutions formed for all or any of the aims as above;
8- To acquire property and equipment;
9- To draw up any rules, policies or standing orders for the effective running of the Group.
10- To do all other such lawful things as are necessary for the achievement of the aims as above.
Current programme for which ASYABI needs grants & donations:
“Raising Awareness and Reaching Marginal Communities with Sickle Cell Disease or Anaemia (SCD) in Yorkshire and in the UK for a Change of Perception”
Mood and Pain Management in chronic illness like Sickle Cell Disorder. Please click on this link below to fill in this survey from the School of Psychology, University of East London https://www.surveymonkey.com/s/UELpainmood2013