Sickle cell in Africa Patient Parents Alliance
Sickle cell anaemia is a grossly neglected health condition in Africa.
The aim of this project is to set up a Secretariat in London from where the Alliance will coordinate its activities and projects, that will bring tangible benefits to many children and young people living in Africa.
Charity information: Sickle Cell & Young Stroke Survivors
The problem we are trying to solve is the neglect of Sickle cell anaemia and the lack of a voice from patients and their carers in Africa.
This platform aims to bring tangible support to patients and their carers.
Through facilitating collaboration within the global Sickle cell community, we provide a strong and collective voice for Sickle cell patient organisations across Africa and the world.
We encourage and support established Sickle cell groups; we do not aim to replace or supersede them.
By working together, we identify collaborative actions across the international community and work towards our vision of a world free from the stigma of Sickle cell disorders.
To bring together patients/parents led African Sickle cell NGO's to form a strong global voice.
Activities» Organise a register of grassroot ngo's that we will work with in the 4 founding countries for the first year.
» Organise Sickle cell medicine Boxes for patients.
What success will look like
The Alliance will have a website which will show the number of NGO's that have registered.
Nurture patient engagement and involvement through educational programs.
Activities» To carry out simultanous educational programes for pateints and their carers to equip them with the skill to manage their condition.
What success will look like
Patents and parents will participate in educational programs where they are encouraged to talk about the issues they face. This will be documented and used to uimprove services.
Patients and Parents in Africa will have a stronger voice that will be heard by their governments, international NGO's, Philantropics to engender Patient Public Involvement & Engagement in healthcare and research in various African countries.
The main risk is lack of accountability for funds.
This has been negated as Sickle cell and young Styroke Survivors is a registered charity which is governed by the charity commission.
We are transparent and accountable to the British public that is why we want the Secretariat to be based in England.
Also, with our 13 years portfolios we do not want to mar our achievements or reputation.
We will report to donors through newsletters, annual reviews and reports.
Budget - Project Cost: £46,000Loading graph....
Amount Heading Description £15,000 Salary Salary for African Coordinator £12,000 Rent Portion for 1 year £3,000 Volunteers Volunteer cost and training £4,000 Medicines 400 Sickle cell boxes, 100 per country £12,000 Workshops £3,000 per Educational programs x 4 countries for 1 year.
Current Funding / Pledges
Source Amount Souter Charitable Trust £2,500 Guaranteed
The project will be based in South London where there is a greater understanding of Sickle cell anaemia as it is a condition prevalent in the African Caribbean communities.
Children, young people and their families living in Africa will benefit from the essential medicine boxes that they receive to boost their moral, health and well-being.
We are have been working in Africa since 2008, through running a Sickle cell centre that helped over 3,000 children and young people from 2008 to 2013 in Nigeria where the disease is the most prevalent followed by Sierra Leone (WHO).
In Nigeria, over 250,000 sickle cell affected babies are born every year with a very high mortality rate especially in the rural areas where healthcare is inadequate.
It is the learned experience that places us in the best position to carry out this project.
Read more about the Charity running this project.
Founder/Chief Executive Officer
African Project Manager