Croatia: Guinness record-chasing MS Youth Club campaigned for rare diseases with photo collection of hugs

A group of young people living with multiple sclerosis (MS) in Croatia achieved local and national media coverage by raising awareness of MS and rare diseases through a very original one-week advocacy campaign run between 21 and 27 February in the city of Zadar, in the run-up to Rare Diseases Day.

The main purpose of the action was to encourage the general public to show warmth and empathy for people living with rare diseases.

The MS Youth Club, part of the Croatian MS Society (SDMSH), was involved in the international Hug for Rare campaign as they attempted to break the Guinness record in the category of the largest online photo album depicting people hugging. The record of 108,121 photos survived, but this did not hamper the young people’s enthusiasm and commitment to continue their advocacy work.

What is a rare disease?

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000 people.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. At EU-level, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

The European MS prevalence for multiple sclerosis, for example, is on average 100 for every 100,000 people.