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In these difficult times with the COVID 19, we are aware that different countries have different measures and recommendations to deal with the situation and support the health system and their citizens.
The IGA board members and our CEO are available for communication via email, WhatsApp and Facebook and they will reach out to IGAs' representatives in the next days so that you can talk about the new problems and challenges that you face in this situation.
Please reach out to us and let us know how can we help out. We will try to find solutions together to overcome the problems that this situation is creating. Let us know if you have questions that we can try and answer, and let us know if patients are missing infusion because of the COVID 19 measures and recommendations.
As patients organizations, I am sure that you are doing everything you can to share information, to get psychological support for families and to endure in the newly formed challenges ahead of us.
Most of the governments succeed in providing treatment for the patients as usual. Home treatment is not available everywhere, unfortunately, and now with all the healthcare focused on the virus, this may be having an effect on patients being able to receive home visit in some countries.
IGA will reach out to the industry so that they can communicate with their national representatives and see what they can do to support patient groups and associations. We will also communicate about the distribution of medicines and ask about all measures taken so no shortage will happen regarding treatment.
The burden is challenging for everyone. Gaucher families are strong, hopeful, and I am sure that all of us will come even stronger when all is resolved. We have been together through a lot and we are brave enough to encounter everything that is in our way. Stay safe and hopeful, and remember that we are all together in this, you are not alone.
Patients who do not have a local patient organisation can reach out to us.