A Very Happy New Year to the Members; Partners; Stakeholders and Well Wishers of the Global Sickle Cell Community.

As we begin 2023, I would like to reaffirm GASCDO’s strongest commitment to advancing on a global scale the education and awareness of Sickle Cell Disease to those it affects and to the wider community at large.

Our cause has been neglected for many years which resulted in the lives of so many precious Warriors being lost. The majority of us continue waging a daily battle just to access basic care and basic quality of life treatment options in order to deal with our chronic pain and fatigue.

All around the world, warriors and their families are supported by patient advocacy groups much like the member organizations that currently comprise GASCDO. These groups have been advocating tirelessly to ensure that our quality and length of life continues to improve, further advances in gene therapy with minimal side effects and ensuring all the resources needed to live a productive, fulfilling, contented life is available should the need occur.

In order to do so, it’s imperative as a community that we stay united and continue to speak with a strong unified voice.

The past is filled with division, a multitude of voices, all with different agendas created such chaos that even our strongest allies did not want to engage. This harmed our community for years and continues to do so to this day. As a patient/CEO, I give you the assurance that I will do all in my power to ensure we do not return to these times. I would do all that it takes to continue to unite all National and Regional Sickle Cell Advocacy groups around the globe under the umbrella of GASCDO.

For the past few years GASCDO has taken the time to listen to the global patient advocacy groups but also the Warriors themselves via the monthly webinars. In 2023 the plan is to implement the insights gained from listening to the community every month.

A few of the proposed items include Capacity Building, Basic Bookkeeping and Advocacy Training workshops for Members, more great educational content for our patients and our second Annual Conference in January 2024 for everyone!
Stay tuned for that. I can assure you 2023 would be a most exciting year, with opportunities for us to meet in person.

While we are always excited and supportive of the creation of patient advocacy groups in countries and places that no such group already exists. We find a strong single group more effective in getting results than multiple groups vying for the same audience but all with the same goal.

We think this is true on all levels.

On behalf of the GASCDO Board of Directors and myself, I would like to state that we are always open and excited to work with independent consultants who have great ideas with Sickle Cell Disease at the heart of them.

The global sickle cell community has come a long way over the past 3 years, with organizations on 4 separate continents collaborating under the umbrella of GASCDO on a global hydration campaign, which saw participation from over 20 countries and this is just the beginning of what we could really achieve, together.

Let’s do so by continuing to come together, strengthening our voice, our community and not weaken it by dividing our forces and very limited resources.

Sickle Cell Disease is painful. Let’s not inflict more pain to ourselves by dividing our efforts, attacking each other and not keeping Sickle Cell the focus of everything we do. Accomplishing this only happens if we continue to work together and stick to the same global message under one entity.

As the President and patient myself, I would like to ask all our members, partners and allies for your continued support and patience as we build together a strong and supportive space for ourselves.

So stay focused, united and blessed!

Yours in advocacy,
Lwimba Kasongo
President/CEO GASCDO


Published On: January 24, 2023 / Categories: news / Tags: /