The International Gaucher Alliance: a foothold in national grassroots advocacy and a collaborative global perspective
Q. Can you tell us about the IGA and the areas it operates?
Back in 1994 in Trieste, Italy, at the first European Working Group on Gaucher Disease, several different European patient groups sat in the back row and listened to the presentations. This was the beginning of the European Gaucher Alliance (EGA). In 2018, the EGA changed its name to the International Gaucher Alliance (IGA) recognising its global constituency. Today we have 56 members representing 54 countries around the globe and represent approximately 85% of the global Gaucher community.
The IGA operates under three strategic imperatives that seek to achieve a strong voice for Gaucher patients through collaboration and partnership:
1.To improve Gaucher patients’ access to optimal diagnosis, treatment, and care
2.To influence the Gaucher research agenda so that it’s focused on addressing key unmet needs
3.To support member organisations to be more effective and sustainable
Q. How challenging is it to operate internationally and across languages and how does IGA overcome these challenges to represent patient organisations globally?
Whether it's disease awareness, access to care and treatment, or personal challenges (social and economic) connected to the countries the individuals with Gaucher disease live in, there are many challenges: our communities are so diverse. As an umbrella organisation we work with our members who support us by acting as volunteer translators and buddies across (geography’s) cultures and languages. We have also begun a review of our literature and in 2021 we will be working to translate some of our key information into several languages and use subtitles on our webinars.
Q. How important do you feel it is to the success of research and the development of new treatments to have this international approach?
As an international organisation we have an overarching view of everything that is going on through our collaboration with all stakeholders. We are therefore in an ideal position to bring people together with common goals and interests, drive research into areas of unmet need, and be able to contribute to research and the development of new treatments.
Q. Through your work and involvement across many countries what do you see as the biggest needs/challenges of the Gaucher community and is there much variation from country to country?
There is huge variation but also similar challenges. As a global community we can allocate resources by sharing best practices and using our knowledge and experience as an organisation to support national patient groups and individual patients and their families. The biggest challenges are access to diagnosis, treatment, and clinical care in many countries, particularly in low to middle-income countries, but also in many other parts of the world. Other challenges include: no licensed treatment for the neuronopathic manifestations of the disease; the delay in getting access to licensed treatment due to the high cost of the treatments even in countries with established healthcare systems; and the increasing understanding of the challenges comorbidities create for clinical care and treatment.
As a global community we can allocate resources by sharing best practices and using our knowledge and experience as an organisation to support national patient groups and individual patients and their families.
With COVID 19 impacting access to treatment, the IGA are now tackling this by working in collaboration with stakeholders to raise awareness of the benefits of home therapy, and to share best practices and exchange knowledge of where home therapy is available.
Q. Does working internationally highlight in-equity in healthcare and treatments for people with Gaucher disease and if so, is IGA involved in trying to address this?
Yes, for individuals with Gaucher and for those with rare diseases in general. All of our work, including work (or our collaborations) with other stakeholders, is guided by our three strategic imperatives, which are each aimed at achieving equity. Internationally, we focus on building sustainable infrastructures and are driven by the patient community to support them with the tools they need.
Our regional manager programme was developed to provide additional on-the-ground resources as the eyes and ears of the IGA in the many different countries where there are Gaucher patients but do not have any formal patient organisation or where there are many challenges. This programme seeks to collect information on the status of awareness, education, diagnostics, treatment, doctors, and patient numbers within a country and then develop a collaborative development plan with all stakeholders to build a sustainable infrastructure for patient care and support.
To read part two of this article, 'UK Gaucher Alliance: a foothold in national grassroots advocacy and a collaborative global perspective', click here:
To continue learning about Gaucher disease and patient support you can read the following articles in this Digital Spotlight here:
Rare Revolution Editor