Volunteer for the Hong Kong Alliance for Rare Diseases

23 May

A rare disease is any uncommon disease with a very low prevalence rate. There are over 6,000 diseases identified as rare diseases worldwide. Most rare diseases are caused by genetic defects or mutation and are found during childhood or even early infancy. In most of the cases, they pose serious threat to a patient’s entire life with extreme disabilities affecting quality of life. Some of them are even degenerative and life-threatening.

The definition for rare diseases differs among different organisations and jurisdictions, as follows: 6.5 to 10 cases in every 10,000 by World Health Organization (WHO); less than 7 in every 10,000 in the US; less than 5 in every 10,000 in the European Union (EU); and less than 1 in every 10,000 in Taiwan.

Some commonly known rare diseases identified in Hong Kong include Mucopolysaccharidosis, Pompe Disease, Infantile Cutaneous and Articular Syndrome, Tuberous Sclerosis Complex, Myelofibrosis, Marfan Syndrome, Spinocerebellar Ataxia, Muscular Atrophy, Fabry Disease, Gaucher Disease, Achondroplasia, various forms of Osteochondrodysplasias, Inborn Errors of Metabolism and Mitochondrial Diseases. Most of the rare diseases are genetic in nature. In spite of a very few reported cases, rare diseases present a real threat to patients’ health, and bring heavy burden to their families.

Hong Kong has in place a world-renowned public health policy, and a healthcare system of high standard. However, we lag far behind in terms of prevention, diagnosis, treatment and protection of rare disease patients, as compared with many countries and places in Europe, US, and Asia. Government has not come up with a clear definition of rare diseases, or formulated related policies. The general public, including some healthcare professionals and social workers, have inadequate understanding and knowledge about rare diseases.

What Hong Kong Alliance for Rare Diseases does
* Enhance understanding of rare diseases among patients, carers and their families; promote self-help and mutual support and positive attitude, towards leading a more fulfilling life.
* Promote public education on rare diseases, strengthen community awareness, understanding and support for patients, their families and related self-help organisations.
* Ensure rare disease patients and their families’ needs and views are represented via policy advocacy and dialogues with Government authorities; leading to the formulation of proper support policies and services to address their needs in medical care, rehabilitation, education, welfare and social participation.
* Support and assist in rare disease-related research study.
* Unite rare disease patients, families, self-help organisations, healthcare professionals and academia, media and other stakeholders, promote collaboration and exchange.
* Promote dialogues, consultation and collaboration among related rare disease organisations in Hong Kong, Mainland China and overseas.

What you can do to help
The Hong Kong Alliance for Rare Diseases organises various events and activities to promote community awareness and support for rare disease patients and families. They invite you to act now and register as their volunteer.

Please download and fill in the Volunteer Registration Form by following this link, and email to info@hkard.org

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