Welcome to Introduction of Rare Diseases
Introduction Rare Diseases is produced by Ågrenska and is a basic and web based course for professionals who meet people with rare diseases and their relatives in their daily work. The course is primarily aimed for those who work within rehab units, schools, LSS-operations (personal assistance) and the Swedish Social Insurance Agency.
The course gives you a basic knowledge of rare diseases. It gives you an insight into the challenges and important areas to consider when it comes to rare diseases. You will also get suggestions on how to work, where to seek more information and where to find help when you need to know more.
The course consists of four modules. The modules are between 10 and 25 minutes long and you can go through them at your own pace. You can log out, then log in at another time and pick up where you left off earlier. After each module you will find a summary and reflection questions. At the end of the course you can test your skills and answer some questions about the course. Afterwards you can print a course certificate. The course also includes a toolbox with suggestions on in-depth courses and information.
The content of the modules is pedagogically set up and consists of animations. It is interspersed with filmed interviews with people living with rare diseases, related persons and various professionals. The modules are subtitled, in Swedish and English. You can go through the modules in your own pace and pause whenever you want.
We recommend that you go through the modules in chronological order, but you can also choose between modules and sections in the menu on the left. When you move on from a section, or if you jump between sections, you need to click ”Finish and Continue” so that the section shall be marked completed. You can also choose to mark a section as uncompleted.
- MODULE 1: WHAT IS RARE DISEASES?
Here you will find out more what rare diseases means and what challenges you can have if you live with a rare disease.
- MODULE 2: THE DIAGNOSIS MAY BE THE KEY
Here you will find out more about how to set an diagnose. You will also find out why it is important to get a diagnosis, both from a medical, a psychological and a social perspective.
- MODULE 3: THE IMPORTANCE OF KNOWLEDGE
In this module it is described why it is important to have knowledge about diagnosis, symptoms and consequences in everyday life. You will also get tips on where to search for information and where to get support.
- MODULE 4: THE IMPORTANCE OF COOPERATION
Here the importance of collaboration is shown, between the person living with a rare disease, his or her relatives, and other professionals which the person is in contact with. Here you also will get examples how to work together.
SUMMARY AND REFLECTION QUESTIONS AFTER EACH MODULE
After each module, the content is summarized in a short form and you get the opportunity for a short repetition.
After each module there are also a couple of reflection questions. Take your time for reflection! The reflection questions can be advantageously discussed in groups and are intended to contribute to discussions concerning how you or your business deals with questions concerning rare diseases and how to develop and continue to meet the needs from persons with rare diseases.
The toolbox consists of references to courses how to learn more about rare diseases. Here you also can find links to more information about rare diseases and contacts to businessesyou can contact to find the right competence or to get answer to your questions.
TEST YOUR SKILLS AND ANSWER SOME QUESTIONS
When you have gone through all the four modules, you can test your skills and answer some questions about the course. All the sections then needs to be marked as completed in the menu on the left, so that you can print a course certificate.
You need to have one of the two latest versions of the web browsers below to implement ”Introduction Rare Diseases”