December 2014 marked the 15th anniversary of European legislation on orphan drugs. Since that day, much has been achieved in Europe. In addition to EURORDIS – the European umbrella organization for those affected – numerous initiatives and programs have been launched. On February 28, 2015, we celebrate International Rare Disease Day. Join us and promote the visibility of diseases that are anything but rare.
In 1985, no one thought that rare diseases would make history. Few Americans were aware that a neglected group of diseases needed special support. Thus, in 1986, the Orphan Drugs Act was passed as a law and since then there has been not only more research into the diseases worldwide, but also more attention to the over 250 million people affected. What really counted here, however, was that a strong movement was initiated by those affected themselves and carried on like a torch to other countries. This has since led to a rethink in medicine and research.
Personal responsibility changed
Patients became active themselves due to the lack of information and therapies and at the same time contributed with a lot of commitment to the fact that today there is more knowledge about rare diseases worldwide. Today, they are also very self-confident in helping to ensure that those affected have a voice in scientific studies and sit on approval committees. In this way, they motivate other sufferers to become active themselves despite their suffering. The only thing is that the information has not yet reached every doctor’s office that people with a rare disease want to be collaborators and not just recipients of a prescription.
EURORDIS
Prime example of cooperation
EURORDIS, which is considered a successful example of European integration and cooperation among its affiliated members, is one of the best networked organizations. The fact that the “bottom up principle” was successful in their foundation laying and further development proves that patients are self-reliant and committed and work together to bring about improvements. After all, many rare diseases would not be as visible today without the tireless efforts of those affected and associated organizations. Today, umbrella organizations cooperate worldwide and exchange information. Thus, as a further milestone, the joint platform RareConnect [1] was founded, which also makes international medical and complementary knowledge available to patients.
Five years ago, on February 28, we carried the torch to Switzerland for the first time and organized International Rare Disease Day together with ten patient organizations and scientists.
Our empowerment program ELFEN HELFEN® was rewarded by Springer Verlag with its own chapter in the reference book “Rare Diseases in the Age of Health 2.0” [2]. The associated comic children’s book has already sold more than 7000 copies and reached an estimated 30,000 readers, has been requested from more than eight countries and was recently nominated for a children’s book award. Medical practices, organizations and hospitals are now also using the book in their work. If you also want to offer it with, you can find information for ordering below.
On February 28, 2015, we once again celebrate International Rare Disease Day. We invite committed personalities and you to a gala event that combines visibility with commitment. You can find the latest information on our website. There you can also register for the gala.
We are equally pleased to receive your valuable contributions on the current topics on our online blog [3].
Book order: www.sowieduundich.org
Literature:
- www.rareconnect.org/de
- Bali RK, et al. (Eds.): Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics 2014; 4.
- http://blog.orphanbiotec-foundation.com
HAUSARZT PRAXIS 2015; 10(2): 6
