Event Detail

IN131 will hold a Community service on coming Saturday to live with to the spirit of establishing the well-being of oneself and others, to exert influencing power of leaders, and to attract attention of more people to rare disease patients and their family.

IN131 will conduct a series of activities with patients of Rett Syndrome and other rare diseases and their families, so that they can feel loved, supported and warmed, and at the same time, raises the concern and awareness about the Rett Syndrome and other rare diseases to the public, which in turn triggers more care and support for Rett Syndrome and other rare diseases, showing that love is not rare.

Rett Syndrome is a neurological disease that seriously affects the development of mental activity in children. The incidence rate is (1/10000-1/15000) which usually occurs in young girls. Children with RETT syndrome are normal in 6 to 18 months, and then the patient will have rapid degeneration and developmental delay, with progressive mental decline, autism behavior, no hand skills, stereotypic hand movements and ataxia. For example, loss of expressive language and motor skills, repeated hand movements (such as repeatedly twisting hands), occasionally gasping, abnormal movement control, and cerebral palsy, epilepsy, autism, limb atrophy, respiratory disorders and variety of extremely bad symptoms.

At present, there is no clear definition of rare diseases in Hong Kong and no relevant medical and supporting policies have been formulated. Therefore, IN131 will raise funds through this event to help patients with Rett Syndrome and their families for improving their lives, reducing the heavy pressure caused by medical treatment and drugs, and enable them to get better treatment.

'Only want to see · Love is not rare' As long as you are willing to look around with your heart, love is often around you and is not uncommon.

IN131 Community Service 'Only want to see · Love is not rare'
Date: 28 Apr 2018 (Saturday)
Time: 13:00 - 17:00
Venue: Haven of Hope Sunnyside School (301 Anderson Road, Tseung Kwan O, New Territories)
Contact: Ada 9200 6898 (Fundraising); Toby 6613 1789 (Volunteer); Joe 6638 3858 (Materials)

Hong Kong Rett Syndrome Association
Http://www.hkrett.org/rett-tc.html