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De EGA is een pan-Europese umbrella groep die de belangen vertegenwoordigt van Gaucherpatienten en Gaucherpatientgroepen in Europa en elders in de wereld. Lokale patientgroepen kunnen in afzondering niet effectief werken. De EGA bied een goede vertegenwooNederlands ▼ login ▼
#IGD2020 #RareButNotAlone #HomesNotHospitals
International Gaucher Day (IGD) was launched in 2014 and is celebrated annually on 1st October to raise awareness of Gaucher disease.
Taking into consideration the challenges currently being faced by our members due to the current COVID-19 pandemic we have decided to focus this years' campaign on home therapy.
Earlier this year we held a webinar and have been working alongside our members to help with letters of support to lobby their governments where needed, using the support and experience of patient advocates in Italy and Greece.
We are asking our members to share their experiences, stories and short statements about how home therapy has/could improve their quality of life as a Gaucher patient and will share these (with permission) across our social media platforms leading up to and on the day.
The IGD2020 poster will be released in September ready for International Gaucher Day on 1 October 2020 and the individual photos will be shared on social media throughout the month of October.