The Brain Life Goals campaign was launched by the European Federation of Neurological Associations (EFNA) to raise awareness of the impact of neurological diseases by exploring the unmet needs of those living with a brain disorder. It encouraged patients to share their #BrainLifeGoals on social media.
In the framework of this campaign, EFNA is providing grants to support work on a chosen advocay theme. This year’s theme is: “Ensuring equitable access to treatment, services and support for neurology patients and their carers”. To this end, they selected 10 organisations which will receive 3000 euros to carry out a specific project.
The European Huntington Association will use this grant to work further on HealthE-RND, which objectives are the following:
1) develop a holistic quality of life questionnaire for HD affected people and their companions
2) Develop a user-friendly digital platform to provide individualized e-health services to HD affected and their companions
3) Execute a one-year intervention with the e-health services
4) Evaluate effect of the intervention with the Quality of life tool.
You can find more information about EHA’s project here.
Dystonia Europe will launch the Jump for Dystonia 2020 awareness digital campaign (the first very successful edition “Jump for dystonia” took place in 2015) to help increase awareness of dystonia, speed up diagnosis and access to treatment. In order to allow everybody to participate, there will be different types of jumpers and participants will be encouraged to share their picture onf social media using #jumpfordystonia2020 and #brainlifegoals. You can find more information about the campaign here.