International Gaucher Day 'Rare But Not Alone'

#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.

 

Social media...

#IGD2020 #RareButNotAlone #HomesNotHospitals

Our 2020 campaign will be totally online with no printed materials or merchandise. Please use your own social media platforms to promote #IGD2020.

  • download and share the #IGD2020 poster
  • change your Facebook cover using the #IGD2020 banner 
  • change your Twitter cover using the #IGD2020  banner
  • share your photos on social media using #IGD2020 #RareButNotAlone #HomesNotHospitals  
  • visit and like us on Facebook 
  • visit and follow us on Twitter @IGAgaucher
  • visit and follow us on Instagram @igagaucher
  • visit and follow us on LinkedIn
  • add the #IGD2020 signature strip to your emails

 

Join us...

Educational webinar on 1 October, 3pm (GMT)

The second of our educational webinars on home therapy, this one will take place on 1 October at 3pm (GMT) to mark #IGD2020 and we will be joined by Niamh Finnegan (clinical nurse specialist from the Royal Free hospital, London) and Callum Stoodley, partner of a GD3 patient who will both share their experiences and the benefits of home therapy.

There will also be the opportunity to ask questions of Derralynn Hughes from the EWGGD who have recently published their statement on Home Therapy.

We will also be joined by Fern Torquati and Kate Theochari, two patient group representatives who have advocated for home therapy in their own countries of Italy and Greece respectively.

Register your place here