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Taiwan's first research center for the treatment of rare diseases has just been established at Taipei's Veterans General Hospital, where clinical services will be offered during night-time and holidays for the convenience of these special patients.

In order to provide better medical services to rare disease patients, Taipei Veterans General Hospital has established a rare disease research and treatment center, which coordinates the resources in different departments, medical and genetic counseling services and treatment.

The center will help patients like Jielun, who has Methylmalonic Acidemia, an inherited disorder in which the body is unable to process certain proteins and fats properly.

When Jielun was 2 years and 7 months old, symptoms started to emerge.

Her mother took her to different hospitals but no one knew the real cause of her conditions.

She finally received the diagnosis at the Taipei Veterans General Hospital and it was until then that Jeilun's mother realized that her baby daughter actually needs strict dietary control because excessive protein intake will damage her physical development, intelligence and even endanger her life.

Now with the establishment of the center, rare disease patients can receive diagnosis and treatment in one place, without experiencing traditional process of waiting and transferring between different departments like Jielun did.

The medical team at the center will also provide convenient access to treatment during nights and holidays.

Representatives of Taiwan Foundation for Rare Disorders said that patients and families affected by rare diseases often face significant problems with securing timely diagnosis, and good quality care and support.

And now with the center integrating all the resources, patients will feel more supported when facing the disease.

Taipei Veterans General Hospital currently provides follow-up diagnosis testing and treatment for over 2/3 of the newborns who have abnormal newborn screening results and the center will also to make it easier for rare disease newborns to receive timely treatments.

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