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8 几个月前

I have been following the work of the Jain Foundat...

I have been following the work of the Jain Foundation Inc for some time now, and I am truly impressed with their impact. They have managed to create an inclusive platform for individuals affected by muscular dystrophy, providing them with the necessary resources and support. Their website, jain-foundation.org, is a valuable source of information and inspiration for the community. Keep up the good work!

G
8 几个月前

I have been researching organizations that support...

I have been researching organizations that support individuals with muscular dystrophy, and the Jain Foundation Inc is one that stands out. Their work in research, support, and awareness is commendable. I highly recommend visiting their website, jain-foundation.org, to learn more about their initiatives and how you can get involved.

T
8 几个月前

As someone affected by muscular dystrophy, I am gr...

As someone affected by muscular dystrophy, I am grateful for the support and resources provided by the Jain Foundation Inc. Their commitment to finding a cure and improving the lives of individuals like me is truly commendable. I highly recommend exploring their website, jain-foundation.org, for valuable information and support.

G
8 几个月前

🌟🌟🌟🌟🌟

🌟🌟🌟🌟🌟
Impressed with the website's user-friendly interface and extensive resources! 🙌🏼🔍📚

M
9 几个月前

The Jain Foundation Inc has been instrumental in r...

The Jain Foundation Inc has been instrumental in raising awareness about muscular dystrophy. Their efforts in research and support have made a significant impact in the lives of those affected by this condition. I appreciate their dedication and commitment to finding a cure. Their website, jain-foundation.org, is a valuable resource for information and support.

J
10 几个月前

I recently came across this foundation while resea...

I recently came across this foundation while researching different organizations that support muscular dystrophy patients. I must say that I am impressed with the work they do. Their website is informative and easy to navigate, providing valuable resources for patients and their families. I highly recommend checking out jain-foundation.org for more information.

S
11 几个月前

The Jain Foundation Inc is a remarkable organizati...

The Jain Foundation Inc is a remarkable organization that truly makes a difference in the lives of individuals affected by muscular dystrophy. Their dedication to research, support, and raising awareness is unparalleled. I am grateful for their commitment to finding a cure and improving the quality of life for those living with this disease.

E
1年以前

I recently discovered the Jain Foundation Inc and ...

I recently discovered the Jain Foundation Inc and was amazed by their dedication to supporting individuals with muscular dystrophy. Their website is a helpful resource filled with valuable information for patients and their families. I highly recommend checking it out!

M
1年以前

🌟 The Jain Foundation Inc is doing an excellent jo...

🌟 The Jain Foundation Inc is doing an excellent job in supporting individuals with muscular dystrophy. Their commitment to research and awareness is truly commendable. Their website, jain-foundation.org, offers valuable resources and support. Keep up the fantastic work! 💪

L
1年以前

I recently learned about an incredible organizatio...

I recently learned about an incredible organization supporting individuals with muscular dystrophy. They have been making a huge difference in the lives of people affected by this condition. Their website is a great resource for information and support. I highly recommend checking it out!

M
1年以前

💪 The Jain Foundation Inc has played a crucial rol...

💪 The Jain Foundation Inc has played a crucial role in funding research and raising awareness about muscular dystrophy. Their efforts have made a significant impact in the lives of those affected by this condition. I am grateful for their commitment and dedication in finding a cure. 💙

N
1年以前

👍 The Jain Foundation Inc is doing an amazing job ...

👍 The Jain Foundation Inc is doing an amazing job in helping those with muscular dystrophy. Their commitment to research, support, and raising awareness is commendable. Their website, jain-foundation.org, provides valuable resources for both patients and their families. Keep up the good work! 💪

V
1年以前

😊 I would like to express my gratitude to the Jain...

😊 I would like to express my gratitude to the Jain Foundation Inc for their outstanding support and efforts in raising awareness about muscular dystrophy. They provide a supportive community for individuals affected by this condition. Their website, jain-foundation.org, is a valuable source of information and support. Keep up the great work! 💪

关于Jain foundation inc

Jain Foundation Inc:Dysferlinopathy 患者的希望灯塔

耆那教基金会是一个非营利组织,一直在不懈努力寻找治疗肌铁蛋白病(也称为 LGMD2B、LGMDR2、Miyoshi 肌病 1)的方法。这种罕见的遗传病会影响肌肉并导致进行性肌肉无力和消瘦。这种情况是由 DYSF 基因突变引起的,该基因编码蛋白质 dysferlin。

2005 年,普拉维·米塔尔·贾恩 (Plavi Mittal Jain) 和她的丈夫阿杰·贾恩 (Ajay Jain) 在他们的儿子被诊断出患有肌铁蛋白病后创立了耆那教基金会。他们决心找到治愈儿子病情的方法,并帮助其他患有这种使人衰弱的疾病的人。

自成立以来,耆那教基金会在了解铁蛋白异常症和开发潜在治疗方法方面取得了重大进展。该基金会与世界各地的领先研究人员建立了合作关系,以推进对这种罕见疾病的研究。

耆那教基金会的一项重要举措是其 Dysferlin 登记处,该登记处收集了全世界患有 dysferlinopathies 患者的临床数据。该注册表帮助研究人员更好地了解这些疾病的自然史,并确定可用于监测疾病进展或治疗反应的潜在生物标志物。

除了其研究工作外,耆那教基金会还为肌铁蛋白病患者及其家人提供支持服务。这些服务包括有关这些疾病的教育资源、针对保险未涵盖的医疗费用的财政援助计划,以及旨在提高对这些罕见疾病的认识的宣传工作。

该基金会的工作得到了各种组织的认可,例如美国国立卫生研究院 (NIH)、肌肉萎缩症协会 (MDA)、CureDuchenne Ventures LLC. 等,他们为推进 Dysfelinopathies 的研究提供了资金支持。

总之,The Jain Foundation Inc 是一个为受 Dysfelinopathies 影响的人带来希望的组织。该基金会在推进研究、提供支持服务和提高对这些罕见疾病的认识方面的不懈努力对患者及其家人的生活产生了重大影响。在捐助者、研究人员和整个社区的持续支持下,耆那教基金会准备在寻找治疗肌铁蛋白病的方法方面取得更大的进步。

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Jain foundation inc

Jain foundation inc

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