TFRD knows that physical condition of rare disease patients can be
treated and controlled by clinical examination, but their emotional
condition is usually harder to perceive, especially since they lack the
social interaction that ordinary people are accustomed to. When
caring for rare disease patients, we have to pay attention to not only
their physical ailments, but more importantly, the psychological
journey that they're experiencing. Starting from pre diagnosis until
after their discovery of their situation, they start feeling anxiety l
eading to fear, depression, and lastly anger. It is obviously clear that
we should spend more time and energy helping them cope with and
understand what they are going through, so they can better deal with
these negative thoughts and feelings.
Let us not forget the other people that are involved in this scenario;
the caregiver/family of the rare disease patient. Caregivers often
experience great difficulty coping with the burden yet they feel they
have a moral and ethical responsibility to just simply walk away.
Their needs are often ignored and we forget that they require just as
much attention as the patient.
Since 2003, we have been conducting a series of psychological
support activities. Through these growth groups, we hope to help
patients open their hearts and minds and share with each other their
experiences and feelings. In this manner, not only can we help
patients develop the ability to solve problems, patients also realize
that they are capable of helping and encouraging others.
In 2006, in cooperation with professional psychology institutions,
TFRD start providing psychological counseling to patients who feel
like talking to the contracted counseling psychologist and seek help
to overcome life predicaments.
Furthermore, TFRD set up a help-line that well-trained volunteer
workers make regular phone visits to patients who cannot go out in
2008. Then, gradually increase the soul cinemas, soul groups, and
grief counseling services to provide comprehensive mental support
for families with rare diseases.

|