40 per cent of Swedes with a rare condition, or their family members, state that a relationship has ended due to a rare condition, according to a study by Swedish biopharmaceutical company Sobi. In addition, 63 per cent say that the disease has prevented them from entering a new relationship.
It has been difficult to maintain social connections during the ongoing pandemic since activities and contacts outside the home have been restricted to avoid spread of infection. For many of the 400,000 people in
"When the pandemic is over, it will be important to remember that many people live with restrictions even in their everyday lives. Involuntary loneliness is a risk factor for illness, and we want to contribute to society by using the insights gained from the pandemic to support those living with a rare condition," says
Four out of ten, or 40 per cent of the respondents in Sobi's survey in
The survey also shows that family, friends, and other close relatives to those who live with a rare condition perceive that their relationships are affected.
"Our research around rare diseases usually focuses on finding and improving treatments for rare conditions, and with this survey we want to highlight how relationships are affected by having a rare condition. Rare Disease Day is a good reminder of the importance to listen and learn more about all aspects of a life with a rare condition, in order for more to be able to live life to the fullest extent," says
There are approximately 6,000 to 7,000 rare diseases, meaning less than one person per 2,000 is affected. In
Information about the survey
The survey was conducted online in USA,
Facts about rare conditions (Source: Sobi and
- In
Sweden there are an estimated 400,000 individuals living with a rare disease. - There are an estimated 6,000 - 7,000 rare diseases with an estimated 75 percent of them affecting children.
- The conditions are often life long, complex and mean severe disabilities.
- Individuals with rare conditions and disabilities may need between 40 and 120 different contacts with health care and social services to make everyday life work.
- Rare conditions often mean that there is inadequate knowledge within health care, social insurance services, the school system and other relevant actors.
- Only 300 rare diseases have approved treatments today.
-
In
Europe , a rare disease is defined as a condition that affects less than one person in 2,000, and they are often inherited, with a harmful defect in the genes that control how the body functions.
More information
About rare diseases: www.agrenska.se/sallsynta-diagnoser
About Rare Disease Day: www.rarediseaseday.org
About Sobi
Sobi is a specialised international biopharmaceutical company transforming the lives of people with rare diseases. Sobi is providing sustainable access to innovative therapies in the areas of haematology, immunology and specialty indications. Today, Sobi employs approximately 1,500 people across
For more information, please contact
Paula Treutiger, Head of Communication & Investor Relations
+ 46 733 666 599
paula.treutiger@sobi.com
+ 46 767 248 830
maria.kruse@sobi.com
Postal address SE-112 76
Phone: 46 8 697 20 00 www.sobi.com
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https://mb.cision.com/Main/14266/3296750/1379722.pdf
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