Rare Disorders


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 taken as a prevalence of less than 1 per 4000 in the community.



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 equipment

Limited genetic testing available locally

Limited local research data on rare disorders

Specific diagnosis

Coping with the loss of a child, grief and bereavment

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

Behavioural challenges

Learning difficulties