Where to get information and meet other patients when you have a rare sickness ? It is to meet these needs that Maladies Rares Info Service has launched a new website dedicated to rare diseases: rarediseasesinfo.org. This site was financed by the Groupama Foundation for Health.
Discuss, learn, testify
This new site offers a variety of services. A first space allows you to dialogue with professionals, to better understand and better live your illness. This exchange can be done by phone, email or chat for more than 800 rare diseases. A second pole allows everyone to share their own experience and learn about the testimonies of other patients through a forum and videos. Medical information for patients as well as healthcare professionals is also available on this platform.
Report side effects
Finally, a space “declare the adverse effects of a drug” allows patients to be accompanied in this process. Indeed, since the law of September 29, 2011, drug users can report their side effects themselves. Last September, the “Adverse Effects Info Services” service was launched to encourage the reporting of adverse effects related to the treatment of rare diseases. A parody video was then disseminated to raise public awareness of the importance of pharmacovigilance.
In France, three to four million people suffer from a rare disease. A disease is said to be rare if it affects less than one person in 2,000. There are currently 7,000 rare diseases, but between 200 and 300 new rare diseases are described each year.
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