The Formation of the Global Voice for Patients and Families with Sickle Cell Disease Worldwide
TORONTO, AMSTERDAM, 06.02.2020
After an intensive period of coordination and preparation, the Global Alliance of Sickle Cell Disease Organizations (GASCDO) announced its establishment and the election of the Chair of the Board and President/Chief Executive Officer in Amsterdam on January 10, 2020.
We are pleased to inform the public and all sickle cell community stakeholders that a global alliance for sickle cell disease has been established! A first of its kind– this unique alliance is the first established entity representing individuals living with sickle cell disease globally.
Sickle cell disease (SCD) is a rare form of hereditary hematological illness that affects over 300,000 births annually around the world. SCD leads to a significantly decreased ability of red blood cells to transport oxygen.
SCD is particularly concentrated in sub-Saharan Africa (especially in Nigeria and the Democratic Republic of Congo); India and the Caribbean region. It is also prevalent, in the eastern Mediterranean and Middle East populations. Even though genetic screening can effectively predict the emergence of SCD in newborn children, such technologies are either unavailable or not affordable for the most affected populations. If left untreated, SCD can lead to premature death, significant disease complications and poor quality of life. Sickle cell disease is notably a global burden.
For GASCDO’s inaugural meeting, 12 patient advocates from 10 countries on five continents convened in Amsterdam. Convening stakeholders of the inaugural meeting included individuals living with SCD, caregivers, healthcare providers SCD patient advocacy organizations, international patient advocates from rare and other disease spaces, pharmaceutical companies, and other invested stakeholders. Guest speakers and advocates presented on the global epidemiology of SCD and challenges associated with regional diversity.
A major outcome of this key meeting was the election of the interim Chair of the Board of Directors and the President/Chief Executive Officer.
“It is an honor to me, but also a responsibility to act as the interim Chair of GASCDO’s board. We must work together in the patient community to be able to make an impact globally”, emphasized Ms. Carol Ossai from UK who has been working as an Expert Parent/Patient and Advocate for years.
“Even though there has been an abundance of local and regional patient organizations for SCD, this is the first time that the patient community has decided to form a global alliance. This is a very important opportunity and an exciting challenge to work together to better understand the needs of the global SCD patient community, and to make an effective impact on the science and policy of the disease”, says Ms. Lanre Tunji-Ajayi, the newly elected interim President/CEO of GASCDO, the Global Alliance of Sickle Cell Disease Organizations
GASCDO is optimally positioned to take on a leading role in coordinating the work of SCD patient advocacy organizations in cooperation with other stakeholders in the field.