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HOME | FAP Self-Help Group
家族性結直腸瘜肉綜合症互助小組
FAP Self-Help Group allows people and families affected by FAP to share their experiences, and support each other.
FAP互助小組週年聯歡會 -> FAP Self Help 02-08-2006
Familial Adenomatous Polyposis Syndrome (FAP) is an autosomal dominant hereditary condition. Once the disease has been identified, great psychological burden is faced by the patient and his/her family. Apart from professional support to guide, educate and counsel affected families, mutual support among affected individuals is also an effective way to facilitate adjustment to the condition. The idea behind establishing the FAP Self-Help Group to provide such a channel for the patient and his/her family to meet, to share their experience with each other and to show their mutual support during their fight with this disease.
The FAP Self-Help Group was set up with the following aims :
1. To provide an opportunity for the members to know each other, express their feelings, share their experiences, and support each other;
2. To facilitate education and counselling of the members;
3. To maintain contact and communication with the members;
4. To provide a comfortable and relaxing environment for the members to ask questions freely.
The FAP Self-Help Group was established in September 1997. Meetings are held quarterly. Format of the meetings include educational talks, experience sharing session, group discussion, social gathering and outdoor activities. The group was initially led by the Registry team members. However, as the group matures, members are willing to take up the role of leading the group. From September 1999, the FAP Self-Help Group has become self-supporting with the Registry serving an advisory role.
An executive committee composed of members from various FAP families has been formed to organise activities for the group. Functional groups have been established to oversee various activities including communication among members, hospital visits, recreational activities and education.
Pleae contact us for more information about the FAP Self Help Group, our email address is mschan1@hkucc.hku.hk
家族性結直腸瘜肉綜合症互助小組 希望透過受綜合症影響家庭成員的經驗分享以達致互相鼓勵及互相支持。
家族性結直腸瘜肉綜合症（FAP） 是一種顯性的常染色體遺傳病。病症一經證實，病人及其家人都會背負著沉重的心理負擔。除了以專業的協助來引導、教育及輔導受影響的家庭之外，受影響人士的互相支持也是有效的方法去幫助患者適應情況。成立互助小組背後的目的是希望透過這個渠道，讓病人見面、分享經驗和一起互相支持對抗疾病。
成立綜合症互助小組主要目的如下：
1. 給予成員一個認識對方、抒發內心感受、分享經驗、互相鼓勵的機會
2. 方便向成員作輔導及教育
3. 與成員保持聯絡和溝通
4. 提供一個舒適輕鬆的環境好讓成員自由發問
綜合症互助小組於1997年9月成立，每一季一次聚會。聚會的形式包括教育講座、經驗交流環節、小組討論、社交聚會、戶外活動等。小組初期是由資料庫成員帶領，現時小組運作已漸趨成熟，而小組成員亦願意擔起帶領小組的角色，所以由1999年9月起，互助小組已經獨立運作，資料庫則擔任顧問的角色。
小組成員亦組成了一個執行委員會作為統籌小組的活動。多個功能小組經已成立，他們分別專注於會員聯絡、醫院探訪、娛樂活動及教育。
如欲多了解有關家族性結直腸瘜肉綜合症互助小組的資料，請與我們聯絡。
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