EFNA Survey: need for increased awareness

A newly published survey conducted by EFNA, shows that young Europeans with neurological conditions lives with a fear of isolation and stigma. This demonstrate the lack of knowledge in the general population. 

Sunday, July 22nd was World Brain Day. To celebrate the day the European Federation of Neurological AssociationsEFNA, launched the results of their recent Survey of Young European’s with Neurological Conditions. 1,368 people responded from 39 countries.

The objectives was to gain an understanding of the biggest issues affecting participants in their daily lives and to learn about the opinion of patient groups.

The majority of the responses came from people impacted by Multiple Sclerosis, Myalgic Encephalomyelitis, Chronic pain or Migrene.

Fear, isolation and lack of understanding

The participants main concern regarded access to treatment. This was despite of the fact that over 70 % of the respondents took prescribed medication. When asked what changes could improve their lives, many answered: a cure, more effective treatment or fewer side-effects. This suggest that the available treatment is often not optimal.

Following closely was the fear of isolation and stigma. This can be attributed to other peoples lack of understanding and knowledge.

Overall, the respondents rated the general understanding of brain disorders to be low (on a scale from 1 to 10 with 10 ranking highest, the respondents rated the general understanding of brain disorders at 2.5).

The same lack of understanding was shown by family, friends and employers.

Read more: EFNA’s Survey

Need for knowledge

The results shows that when it comes to neurological and rare diseases there’s still a long way to go. It seems like there’s a need for increased advocacy and knowledge.

Two-thirds of the respondents had never taken part in any awareness campaign. However, the same amount of people indicated that they could be interested in doing so. Further, the majority were interested in learning more on how they could get involved.

EFNA will use the information gathered by the survey to develop future workplans. Member associations, such as EHA, will do our best to continue our work by increasing awareness and spread knowledge.