GASCDO represents:

  • Patients with SCD

  • Parents, carriers, and families of patients with SCD

  • National and regional SCD organizations

  • Health care professionals

  • Educators and advocates

  • Community representatives

  • Others not limited to individuals, organizations, institutions (including centers of excellence, research and care provider organizations); and the industry.

Corporate Sponsors

Our History

The Global SCD Patient Advocacy Ad board meeting of the Novartis held in London, UK on March 15th, 2019 provided the attending representatives of patient organizations the crucial opportunity to deliberate on global SCD issues including the need for the formation of a global SCD patient organization. It is indeed commendable that within a few months of the conclusion of the Ad board meeting, these global advocates moved forward on October 21st 2019, with the registration of the Global Alliance of Sickle Cell Disease Organizations (GASCDO) in Canada.

In attendance at the Ad board meeting were:

  1. Salam Alkindi – Oman Hereditary Blood Disorder Association, Oman
  2. Yolande Adjibi – Federation of Sickle Cell and Thalassemia Patients SOS Globi, France
  3. Carol Ossai – Sickle Cell and Young Stroke Survivors, UK
  4. Adlette Inati – Georges Nassim Khoriaty Foundation (GNK) Foundation, Lebanon
  5. Suman Jain – Thalassemia and Sickle Cell Society, India
  6. Jaffer Al tooq – Bahrain Society for Sickle Cell Disease Patient Care, Bahrain
  7. Mary Ampomah – Sickle Cell Association of Ghana, Ghana
  8. Marimilia Pita – Lua Vermelha, Brazil
  9. John James – Sickle Cell Society, UK
  10. Chuck. V. Chesson – American Society of Hematology, USA
  11. Cassandra Trimnell – Sickle Cell 101, USA
  12. Beverley Francis-Gibson – Sickle Cell Disease Association of America, USA
  13. Biba Tinga – Sickle Cell Disease Association of Canada, Canada
  14. Mariangela Pelegrini – ERN-EuroBloodNet, France
  15. Şahin Özbingöl – KANDER, Turkey

The founding patient organizations that attended the March Ad board meeting convened the inaugural face-to-face meeting of the GASCDO on January 9-10, 2020 in Amsterdam, Netherlands to make the establishment of the corporation official. What a historic event!

Participants at the face-to-face meeting include presenters, pharmaceuticals and patient organizations from ten countries across five continents: Australia, Bahrain, Brazil, Canada, France, Germany, Ghana, Oman, USA, and UK.

At this meeting, Carol Ossai was elected interim chair of the board and Lanre Tunji-Ajayi (Canada) was appointed the interim President/CEO of this new organization. Sadly, Carol died on April 10, 2020, succumbing to a brief illness. Lanre continued to serve as the founding president/CEO of the organization until August 31st, 2020 when her interim appointment concluded.

GASCDO Leadership

Issa Ali
Chair

Judy Grandison
President/CEO

John James
Board Governance

Beverly
Francis-Gibson
Board Governance

Mary Ampomah
Membership Committee Chair

Biba Tinga
Membership Committee Co-Chair

Adlette Inati
Scientific Committee Co-Chair

Marimilia Pita
Scientific Committee Co-Chair

Cassandra Trimnell
Communications

Vision, Mission & Objectives

With the belief that the quality of care and treatment for sickle cell disease should not be determined by where you live; the Global Alliance of Sickle Cell Disease Organizations (GASCDO) will work with National Member Organizations (NMOs), Regional Member Organizations (RMOs) and collaborators to ensure GASCDO is abreast of challenges faced in their communities in order to provide them with effective support.

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) will:

Work in partnership with National and Regional SCD organizations, health care providers and other necessary collaborators to raise public and government awareness and coordinate SCD advocacy and support globally;

Support the development and sustainability of global sickle cell disease comprehensive and prevention programs, especially in countries with low resources;

Spread good practice globally, including the development, dissemination and implementation of clinical care guidelines.

Vision

Reduce global incidence of Sickle Cell Disease (SCD) and ensure equitable access to optimal care and treatment by all people with SCD worldwide.

Mission

To inspire hope and improve the quality of life of all people with SCD worldwide.

Objectives

Support access to disease-modifying innovative therapies including clinical trials and research by all people with sickle cell disease (SCD) regardless of where they live in the world.