Every individual counts
There is a fate behind every rare disease. Many of those affected and their families feel lonely and alone, looking for answers and people to talk to. Although the disease is officially referred to as rare, the number of people affected is immense.
Affected humans
< 5 of 10.000
means a rare disease
World-wide
6.000 +
different diseases
Annual
250 +
new diseases
European-wide
30M +
affected humans
In the European Union, a disease is considered rare if it affects no more than 5 in 10,000 people. Since there are more than 6,000 different rare diseases (RDs) and around 250 new diseases are added every year, the total number of people affected is high despite the rarity of the individual disease. In Germany alone, it is estimated that around four million people live with a rare disease, and in the entire EU it is assumed that around 30 million people are affected.
Rare diseases form a group of very different and mostly complex clinical pictures. Most rare diseases are chronic, are associated with health restrictions and/or reduced life expectancy, and often lead to symptoms in childhood. Over 70 percent of rare diseases are genetic or co-caused, and are rarely curable.
Moving forward together!
There are no approved therapies for most rare diseases, including NALCN-related diseases. Given the small number of patients, there is often little incentive for pharmaceutical companies and other companies to support the development of personalized therapies. However, important steps could be taken with public relations and investments. This makes the foundation’s work all the more important – and for those affected, every day counts. Many university hospitals have now set up their own centers for rare diseases and, thanks to social media, self-help groups and initiatives can also network globally. Because “rare” can still have a big impact – and we at the Channeling Hope Foundation are working hard on this.
Further information can be found on the website of the Federal Ministry of Health