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S
8 几个月前

I found useful information about Glut1 Deficiency ...

I found useful information about Glut1 Deficiency on their website. It's good they are raising awareness and supporting patients, but more interactive content and resources would be helpful.

K
8 几个月前

The Glut1 Deficiency Foundation is doing an excell...

The Glut1 Deficiency Foundation is doing an excellent job in raising awareness and providing support for those affected by this condition. I am grateful for their efforts and the valuable resources they offer. Keep up the great work!

M
9 几个月前

I recently came across the Glut1 Deficiency Founda...

I recently came across the Glut1 Deficiency Foundation and found their website to be very informative and helpful. The resources they provide are valuable, especially for families dealing with Glut1 deficiency. Highly recommend!

J
9 几个月前

🌟 The Glut1 Deficiency Foundation is doing an exce...

🌟 The Glut1 Deficiency Foundation is doing an excellent job in providing support and resources for individuals and families impacted by Glut1 deficiency. Their website is easy to navigate and the information is helpful. Well done! 👏

N
1年以前

I recently visited the Glut1 Deficiency Foundation...

I recently visited the Glut1 Deficiency Foundation's website and was impressed with their dedication to providing support for Glut1 deficiency patients. The information is presented clearly and the resources are valuable. Highly recommend!

J
1年以前

💯 The Glut1 Deficiency Foundation is doing an amaz...

💯 The Glut1 Deficiency Foundation is doing an amazing job in supporting individuals and families affected by Glut1 deficiency. Their website is filled with valuable information and resources. Keep up the great work! 👍

M
1年以前

I recently came across the Glut1 Deficiency Founda...

I recently came across the Glut1 Deficiency Foundation and their website exceeded my expectations. The resources available are comprehensive and easy to access. Highly recommend checking out their valuable work!

J
1年以前

👌 The Glut1 Deficiency Foundation is doing an amaz...

👌 The Glut1 Deficiency Foundation is doing an amazing job in raising awareness and providing support for individuals and families affected by this condition. The resources available on their website are top-notch. Keep up the great work! 👏

M
1年以前

I recently discovered the Glut1 Deficiency Foundat...

I recently discovered the Glut1 Deficiency Foundation and I am impressed with their dedication to raising awareness and providing support for those affected. The resources available on their website are invaluable. Highly recommend!

A
1年以前

👍 The Glut1 Deficiency Foundation is an amazing or...

👍 The Glut1 Deficiency Foundation is an amazing organization that provides support and resources for individuals and families affected by Glut1 deficiency. Their website is user-friendly and filled with valuable information. Keep up the good work! 👏

J
1年以前

The Glut1 Deficiency Foundation is doing a fantast...

The Glut1 Deficiency Foundation is doing a fantastic job in raising awareness about Glut1 deficiency and providing valuable resources. The information on their website is comprehensive and easy to understand. Kudos to the team!

K
1年以前

I am grateful for the Glut1 Deficiency Foundation'...

I am grateful for the Glut1 Deficiency Foundation's commitment to raising awareness about this condition. Their website is informative and the resources provided are valuable for those affected. Keep up the good work!

关于Glut1 deficiency foundation

Glut1 缺陷基金会 - 为 Glut1 缺陷社区提供帮助和希望

Glut1 Deficiency Foundation 是一个非营利组织,旨在为受 1 型葡萄糖转运蛋白 (Glut1) 缺乏症影响的个人和家庭提供帮助和希望。该基金会于 2010 年由患有 Glut1 缺乏症的儿童的父母成立,他们对缺乏可用的信息、资源和支持感到沮丧。

Glut1 缺乏症是一种罕见的遗传病,会影响葡萄糖输送到大脑的方式。这会导致一系列神经系统症状,例如癫痫发作、发育迟缓、运动障碍和认知障碍。由于其罕见性和与其他神经系统疾病的相似性,该病症可能难以诊断。

Glut1 Deficiency Foundation 的使命是通过教育、宣传、研究资金和支持服务改善受这种情况影响的人们的生活。该基金会与医学专家、研究人员、政策制定者和其他组织密切合作,以提高人们对 Glut1 缺乏症的认识,并推广更好的诊断和治疗方案。

Glut1 缺陷基金会的主要举措之一是他们的患者登记计划。该计划收集了世界各地被诊断患有 Glut1 缺乏症的个人的数据,以便更好地了解该病症的患病率、症状、使用的治疗方法等,这将有助于研究人员开发新疗法或改进现有疗法。

该基金会还为患者/家庭以及医疗保健专业人员提供教育资源,包括与过剩转运蛋白缺乏综合征 (GTDS) 相关的各种主题的网络研讨会、专家分享 GTDS 知识的会议等,以便每个人都能及时了解最新动态- 关于管理这种罕见疾病的当前研究结果或最佳实践的日期。

除了上述这些程序/服务之外;他们还为因 GTDS 护理相关的医疗费用而在经济上苦苦挣扎的家庭提供经济援助补助金;为从事医学或与 GTDS 相关研究的学生提供奖学金;和旨在改善受这种情况影响的人获得护理的宣传工作。

Glut1 Deficiency Foundation 对于任何被诊断患有 Glut1 Deficiency 或认识患有 Glut1 Deficiency 的人来说都是一个很好的资源。该基金会的网站提供了有关该病症的大量信息,包括症状、诊断、治疗方案和可用的支持服务。他们还在 Facebook 和 Twitter 上拥有活跃的社交媒体存在,在那里他们分享有关 GTDS 社区中发生的最新研究结果或事件的新闻更新。

总之,Glut1 Deficiency Foundation 是受 Glut1 Deficiency 影响的个人和家庭的宝贵资源。他们对教育、宣传、研究资金和支持服务的承诺使他们成为罕见病组织领域的领导者。如果您在管理这种罕见疾病方面寻求帮助或希望,那么 Glut1 Deficiency Foundation 就是您的最佳选择!

已翻译
Glut1 deficiency foundation

Glut1 deficiency foundation

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