Due to the rarity of each disease, there is a lack of scientific knowledge and reliable information which leaves families affected by these diseases unsure of what to do to get help. Symptoms of rare diseases differ from patient to patient which leads to further confusion.
These problems can lead to:
- No existing effective cures due to lack of scientific research
- Delays in diagnosis
- Lack of appropriate health care
- Misunderstanding by friends, family and the wider community of the issues the patients and families face
- Heavy social and financial burdens on patients and their families
