罕盟 x Maggie Oriental 慈善活動

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Maggie oriental 將於2019年1月13日（星期日）再度舉辦《Dance of Love 2019 善舞傳愛心》慈善籌款匯演，與上次一樣，扣除成本後的所有收益均全數捐給「香港罕見病聯盟(HKARD)」(下稱罕盟)，希望大家一齊參與善舉，並慷慨解囊。
活動介紹：
《Dance of Love 2019 善舞傳愛心》
日期：2019年1月13日(星期日)
場次：下午3-5時、晚上7-9時, 共兩埸
地點：觀塘翠屏道3號基督教家庭服務中心一樓禮堂
票價：$300(不設劃位)
主辦單位：Maggie Oriental
受惠組織：香港罕見病聯盟(HKARD)
繼2017年籌款匯演後，加上近年政府和社會各界對罕病多了關注，相信大家對「罕見疾病」已有一定認識，「罕病」似乎不再「罕聞」，不過我們都來個溫故知新。「罕病」即是患病率極低、人數極少，主要由基因突變或遺傳的基因缺陷導致。目前全球已知的罕見疾病約6,000多種，據世界衛生組織所指，每一萬人中只有6.5至10個個案的疾病，就可以定為「罕病」，奈何香港政府現時仍未為罕病訂立清晰定義，亦未制訂相關醫療及支援政策。然而，香港每年均有罕病新增個案，但社會大眾甚至部份醫護人員及社會工作者，對罕病的認知亦非常缺乏。雖然特首林鄭月娥女士親自對過問引入「脊髓性肌肉萎縮症(SMA)」用藥，但全面的罕病政策仍然是欠奉，罕病患者仍要為確診遊走各專科，即使有藥可醫的仍要四出籌錢、請願及乞求。
「罕盟」是一個凝聚香港罕見病患者及家屬的組織，主力為罕見病者向政府爭取關注及幫助的組織。因此，Maggie希望以自己能力及凝聚其他舞團力量，幫助社會上需要關注，但又較易受忽略的非牟利疾病/醫療團體，而「罕盟」正正就是其中一個。今次的演出目的，除了為「罕盟」籌募經費外，更希望讓社會及政府正視他們的需求，確立罕病定義、建立罕病數據庫，加強罕病遺傳專科服務、加強罕病醫護團隊培訓及進一定制訂相關支援及保障政策。
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We would like to invite you to participate in 「Dance of Love 2019」 Charity Performance on Sunday, 13th January, 2019. It would be our honour to have you and contribute donation and effort to a good cause. This is a fund-raising event for Hong Kong Alliance for Rare Diseases (HKARD); all proceeds will go to HKARD and your support will be beneficial to the needy they help and represent.
《Dance of Love 2019 善舞傳愛心》
Date：13 Jan, 2019 (Sun)
Show Times：3:00-5:00pm、7:00-9:00pm (2 sessions)
Venue：Auditorium 1/F, Christian Family Service Centre, 3 Tsui Ping Road, Kwun Tong
Ticket：$300 (Free Seating)
Organizer：Maggie Oriental
Beneficiary Organization：Hong Kong Alliance for Rare Diseases (HKARD)
Though we are glad that there has been an increase in public awareness since our last fund-raising event - Rare Diseases are not as “rare” as they used to be to both the government and the public, the patients still need kind-hearted support for their medical and financial needs. There are around 6,000 types of Rare Diseases, which are genetic diseases affecting a small percentage of the population (6.5 – 10 in a million). In terms of dealing with Rare Diseases, Hong Kong lags behind other developed countries and has yet to come up with a clear definition of Rare Diseases, which makes it difficult to shape existing health-care policies to attend to the dire needs of the increasing number of patients. Even though the subject was briefly in the limelight when Ms. Carrie Lam addressed the issue of Spinal Muscular Atrophy treatment, the reality is that the patients have very limited resources to cope with their conditions, since the policies and the holistic support are still seriously lacking.
HKARD is one of the few organizations that offer resources to Rare Diseases patients and appeal for proactive policies. Maggie hopes to dedicate this event to HKARD and we will need your support to inject positivity and momentum into their cause.
#善舞傳愛心 #舞蹈表演
#MaggieOrientalDance #HKARD #多多支持