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ABOUT US

ABOUT US

WHO WE ARE

WE ARE SICKLE CELL SOCIETY IRELAND

Sickle Cell Society Ireland (SCSI) is the Official Umbrella organisation for all sickle cell support groups in Ireland. It is a parent led NGO Organisation working at local, regional, national and European Union level.

SCSI works in partnership with Sickle Cell Society UK, Pan European Sickle Cell Alliance (PESCA ), Global Sickle Disease Network (GSCDN), Worldwide Initiative on the Social Study of Haemoglobinopathies (WISSH), Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University, UK, Irish Blood Transfusion Services and the Children’s Hospital in Crumlin.

The foundations of SCSI was laid in 2006 during a Trinity College Social Work Master’s Thesis (written by Esther Onolememen) which addressed African Parents’ Experiences of Living and Coping with Children with Sickle Cell Disease in Ireland. Esther Onolememen is currently doing a PhD in Public Policy addressing Health Policy implications of Sickle Cell Disorders in Ireland.

One of the key findings of her initial research was the lack of social support for people affected by sickle cell in Ireland. The study identified the key barriers faced by families, owing to the lack of community/social supports and how these factors impact on their views and constructions of their children living with sickle cell in Ireland. One striking finding was how the ‘notion/myths of early death in sickle cell’ for some parents, meant that planning their children’s future was a waste. Stigma was also identified as a barrier to services.

SCSI continued to support parents on a one-to-one basis since 2006. In February 2013, under collaboration with the UK, the Sickle Cell Society of Ireland was officially launched in Dublin. SCSI work focuses on Parent Support, Advocacy, working in Partnerships with local, international and EU level support services & Creating Awareness of Sickle Cell through Educational Workshops, Conferences and Seminars.

2006-2012

The foundations of SCSI was laid in 2006 during a Trinity College Social Work Master’s Thesis. SCSI Continues to support parents on a one-to-one basis
2012-2014

February 2013

SCSI held it’s first event open to anybody in the public who would want to come and it was mainly about the teachings of the sickle cell disease to the open public. It was a success and featured many guest speakers

March 2013 - January 2014

SCSI held many training sessions & launched projects during this period. In March 2013, the Easter Project for sick children in the hospital was launched. SCSI provided 70+ sick children in the hospital with an easter gift bag.

In June of 2013, SCSI held it’s 1st annual Wold Sickle Cell day celebration by educating people about Sickle Cell as a part of the communities outreach project.

From late 2013 to Early 2014, SCSI held leadership training sessions & stakeholder meetings. In early 2014, SCSI launched the Strategic Plan & the Outcome Report

Inaugural Ceremony for Sickle Cell Ambassador

2015

Colours of the Sickle Annual World Sickle Cell Celebrations

The WSCD was declared by the United Nations in 2008 as a day set aside to globally raise awareness for sickle cell disease. Hugely celebrated on the 19th of June around the world since 2008; in Ireland however, 2015 will mark our 3rd official celebration so far. As part of our agenda for this event, we will have a week of public education awareness campaign event commencing on the 16th of June and this is planned to end on the 19th with an awareness charity ball – Colours of Sickle Cell” featuring live band, comedy, drama and fashion show.

VISION

To thrive in excellence as a leading international organisation for sickle cell providing quality and accessible access to treatment and care for vulnerable children and families with sickle cell.

MISSION

The mission of SCSI is to promote seamless initgration betwween the health and the education system and the community; promote paintents and public engagement via collaboration for responsive care; and promote justice, the social protection and intergration of people living with SCD and their immediate families.

Objectives

SCSI Aims To advance public and health education in sickle cell disease by carrying out or assisting in carrying out research into the causes, effects and treatment of sickle cell disease and to disseminate the useful results of such research.

BOARD OF DIRECTORS

CEO & Founder Esther Onolememen work with a talented team of professionals to accomplish the goals of the society

ESTHER AKANDE

Board of Director

ROSEMARY OKAFOR

CHIEF INFORMATION OFFICER

DEBOLA ABDUL – IBIYEYE

PROJECT OFFICER

REBECCA OJUKA

BOARD OF DIRECTOR

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