INTRODUCTION OF RARE DISORDER
Rare disorders including those of genetic origin, are life threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them.
As a guide, low prevalence is take as a prevalence of less than 1 per 4000 in the community.
- Low scientific knowledge (false perception about rare disorders – ‘not important’ enough)
- Absence of cure and treatment that could improve quality of life
- Low knowledge amongst health professionals & public
- Negative social consequences
Limited educational resources on rare disorders for patients & family members especially in different languages
Lack of public support groups for patients with rare disorders
Limited professionals trained in early intervention programmes &
services need to be ‘trained in early’
Lack of awareness and understanding among medical professionals, organisations and community on the needs of individuals with rare disorders
Limited funds to support treatment or to purchase special orphan drugs and vital equipments.
Limited genetic testing available locally
Limited local research data on rare disorders
Specific diagnosis
Dealing with feelings of guilt, shame and blame
No specific diagnosis where there is no specific diagnosis there can be particular difficulties, including :
Health maintenance
Health surveillance
Sleep Problems
