#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What are the 5 missions of the National Reference Centers for Rare Diseases?

Answer :

- Coordination and animation of the care network
- Multidisciplinary and multi-professional diagnostic, therapeutic and follow-up care
- Expertise
- Search
- Education and training

 

To know more, take a look at Solidarité Santé


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What are the 3 main missions of rare disease network in France ?

Answer : The 23 rare disease networks have as their missions :
- Improvement of health care, medico-social and social care
- Research: Fostering the continuum between basic and clinical research
- Education, training and information

 

To know more, take a look at Solidarité Santé


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

How many centers of reference for the care of rare diseases (CRMR) have been labeled in 2017 in France for the next 5 years?

Answer : there was 109 reference centers for rare diseases labeled in 2017.

 

To know more, take a look at Solidarité Santé


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

How many national rare disease networks exist in France?

The organisation of care is structured into 23 rare disease health systems (FSMR).

Plus d'informations sur Solidarités Santé


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What is the impact of rare diseases on couples?

Couple's difficulties are frequent among sick people and parents of sick children. 72% of the people concerned express couple's difficulties, including 37% of high tensions, separations or divorces.

To find more, go on Maladies Rares Info Service.


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What social risk is most frequently observed on rare disease patients?

Isolation.
According to the Rare Disease Observatory's 2015 survey, half of the people surveyed indicate that the sick person feels isolated from friends and close relatives because of their illness.


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What are the consequences of rare diseases on patients' mental health?

According to the Rare Disease Observatory's 2015 survey, 62% of people suffering from rare diseases suffer from depressive episodes, seizures or behavioural disorders. According to the same survey, 1 out of 3 sick people are offered psychological care.

To know more on this subject, check Maladies Rares Info Service.


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

What is the impact of a rare disease on work?

According to the survey of the Rare Disease Observatory dating from 2015, the pathology leads 50% of sick people and parents of minor children to not or no longer work and 25% to temporarily interrupt their professional activity.

 

Fond more on Maladies Rares Info Service


#What Do I Know About Rare Disease ?

Test your knowledge with BlueDil !

School and rare disease: how many sick people attending school have benefited from specific support or school facilities?

According to the Rare Disease Observatory's survey of 2015, 42% of people with rare diseases attending school benefits from specific accompaniment or educational arrangements.
60% of people confronted with the educational body (patients or parents of patients) feel that they have been well, or even very well, welcomed and listened to by the educational teams.

Find more informations on Maladies Rares Info Service


#What Do I Know About Rare Diseases ?

Test your knowledge with BlueDil !

School and rare disease: Which law rules the conditions of reception of sick people attending school?

The Disability Act of 11 February 2005 on "Equal rights and opportunities, participation and citizenship of persons with disabilities" stipulates that every person with a disability has the right of help from the entire national community, which, by virtue of this obligation, guarantees him or her access to the recognized fundamental rights of all citizens, including the right to education.

More informations on Maladies Rares Info Service.

To know more about the Disability Act of 11 February 2005