HK Acrofriend

11/10/2018

部分罕見疾病和癌症藥物極度昂貴，雖然有「安全網」撒瑪利亞基金和關愛基金為有經濟需要的病人提供援助，但往往被批評為申請門檻過高。今日（10日）《施政報告》宣布，經檢討現時藥費分擔經濟審查機制後，建議減少須....

21/07/2018

Gruesome genetic conditions afflict a handful of city residents; even if treatments exist, slow pprovals and stratospheric costs can keep drugs out of reach.

04/07/2018

From the desk of Linda M. Rio, M.A., Marriage and Family Therapist and PWN contributor. I recently met with someone diagnosed with a pituitary tumor who inspired me to write about this topic. I realize that even though I have written and spoken about the role for children in the “system” of a pi...

23/05/2018

17/05/2018

沒有哺乳卻流出乳汁；已經成人卻手腳繼續變大；突然體重變重，腫成月亮臉，都可能是腦下垂體腫瘤在作怪！

17/05/2018

PW Contributor Denise meditates on the power of prayer and the role it plays in the rare disease community and families.

15/05/2018

  The nomination deadline has been extended to May 31st!   Annually, the Rare Disease Community comes together to look amongst themselves to identify and nominate individuals who have bec…

15/05/2018

The hypothalamus and pituitary gland are key players in the endocrine system. The pituitary, which is controlled by the hypothalamus, is often called “The Maste

14/05/2018

Daphne Adelman As a nurse, Daphne Adelman has two main goals: for her patients to have options and access when it comes to their medication and treatments, and for them to have a good quality of life. Daphne was nominated by Jill Sisco, an acromegaly patient and leader of the patient organization, A...

14/05/2018

NORD gratefully acknowledges John D. Carmichael, MD, Associate Professor of Clinical Medicine, Keck School of Medicine of the University of Southern California, for assistance in the preparation of this report.

11/05/2018

Medication treatment

“Have you read our consensus document on the medical management of ? https://t.co/ayIlLgOYXz”

11/05/2018

The latest Tweets from Pituitary Foundation (). Leading UK & ROI providing & support to people living with pituitary conditions - Patients, family & friends. 0117 3701333. UK & ROI

11/05/2018

Thanks for coming to the INTERNATIONAL ACROMEGALY CONFERENCE in September! Photos and Videos of the event are uploaded here and here . Or check out our YouTube Channel here . NEXT UP: Regular...

10/05/2018

這是香港垂肢友的分享平台， 垂肢友就是因垂體腫瘤而引起肢端肥大的病友。 英文 HK Acrofriend也是Hong Kong acromegaly friend 的簡稱。因為香港暫時還沒有這個平台， 應大陸病友的提議，本人暫時創建了這個平台。 這裏暫時沒有專家，只有病者，家人和朋友。 我希望在不久的將來，從分享資訊，病歴和經驗，讓更多的香港人認識這個人體中的隱形殺手，而患上此病的人從此不再疑神疑鬼，可以在這個殺手還未致你於死地之前，找到患病的根源從而改善病友們的生活質素。

這是香港垂肢會的分享平台， 暫時沒有專家，只有病者，家人和朋友。 我�

10/05/2018

注射用醋酸奥曲肽微球的作用 注射用醋酸奥曲肽微球副作用 注射用醋酸奥曲肽微球说明书 奥曲肽 已证实的使用 ：肢端肥大症 用于下列肢端肥大症患者的治疗 ：在皮下注射标准剂量的善宁后，病情已充分控制 ；不适合外科手....

10/05/2018

Rare Disease Hong Kong Limited

香港罕見疾病聯盟有限公司

10/05/2018

New guidelined for the treatment of acromegaly, a serious growth hormone disorder.

It’s said a lot can happen in seven days. In seven years, a lot has happened in the understanding of acromegaly, a debilitating condition that causes a patient to have too much growth hormone. It’s seven years since the American Association of Clinical Endocrinologists last produced guidelines f...

10/05/2018

體內生長激素持久性過多分泌引起軟組織，骨骼及內臟的增生肥大，以及內分泌代謝紊亂，發生於青春期前，骺部未融合者為巨人症（gigantism）；發生於青春期後，骺部已融合者為肢端肥大症（acromegaly）。巨人症患者常繼續發.....