Tuesday April 27th 2021- a facilitated workshop for those who identify themselves as a support group for people living with genetic, undiagnosed and rare conditions.
It is preferable for participants to be a GSNV member. You can become a member now. Click here
As part of the Rare Disease Day celebration in 2021 we are creating a workshop event to bring genetic support groups together.
The content of the workshop will follow the theme of our Rare Disease Day event – “Who’s on your team ?” bringing you a morning of mentoring – each attending support group will be led through a process to identify the key players and individuals that will give you the greatest impact in your advocacy and awareness. The outcome of the day will be to strengthen the capacity of individuals as leaders of their GUaRD (Genetic, Undiagnosed and Rare Disease) community to establish their ‘team’, with knowledge about who needs to be on it, how to build it and how to get it working for you.
With Covid-19 Safe restrictions still driving how we can gather, our facilitators will meet with us face to face and roam through your support group breakout rooms as you take part within your own community locations via ZOOM. This will allow you to pull together your own working group from your community with the benefit of facilitation from the GSNV.
Everyone is welcome to attend and we encourage you to take part in this event which could shape the future of your organisation.