February 2012 LAM update
INTERNATIONAL RARE DISEASE DAY – 29 February 2012
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives.
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives.
There are about 7000 rare diseases identified. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient.
People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives. By highlighting these issues, the New Zealand Organisation for Rare Disorders and The New Zealand LAM Trust join with the USA’s Office of Rare Diseases Research and Europe’s Rare Disease umbrella group Eurordis to:
- Raise awareness of rare diseases
- Strengthen the voice of patients and patient advocacy groups
- Give hope and information to patients
- Bring stakeholders closer together
- Institute policy actions within New Zealand and with other countries
- Inspire continued growth of the awareness of rare diseases
- Emphasize rare disease research and the search for new therapeutics
- Get equality in access to care and treatment.
