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:
- Salam Alkindi- Oman Hereditary Blood Disorder Association, Oman
- Yolande Adjibi- Federation of Sickle Cell and Thalassemia Patients SOS Globi, France
- Carol Ossai- Sickle Cell and Young Stroke Survivors, UK
- Adlette Inati- GNK Foundation, Lebanon
- Suman Jain- Thalassemia and Sickle Cell Society, India
- Jaffer Al tooq- Bahrain Society for Sickle Cell Disease Patient Care, Bahrain
- Mary Ampomah- Sickle Cell Association of Ghana, Ghana
- Marimilia Pita- Lua Vermelha, Brazil
- John James- Sickle Cell Society, UK
- Chuck. V. Chesson- American Society of Hematology, USA
- Cassandra Trimnell- Sickle Cell 101, USA
- Beverley Francis-Gibson- Sickle Cell Disease Association of America, USA
- Lanre Tunji-Ajayi- Sickle Cell Awareness Group of Ontario, Canada
- Biba Tinga- Sickle Cell Disease Association of Canada, Canada
- Mariangela Pelegrini- ERN-EuroBloodNet, France
- 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 an 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.