Jain Foundation Inc

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The Jain Foundation's mission is to identify treatments for Dysferlinopathy also known as LGMD2B/R2 or Miyoshi Myopathy

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200284800

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Address: 9706 4th Ave NE Ste 101, SeattleWeb: Sign in to see organisation websiteFacebook: JainFoundationICO: 200284800

Jain Foundation - Dysferlin Registry - LGMD2B/R2 - DYSFERLINOPATHY - MIYOSHI MYOPATHY 1 ORCHESTRATING A CURE FOR DYSFERLINOPATHY The Jain Foundation is singularly focused on finding a cure for dysferlinopathy also referred to as LGMD2B LGMDR2 Miyoshi Myopathy 1 ORCHESTRATINGA CURE FORDYSFERLINOPATHY The Jain Foundation is singularly focused on finding a cure for dysferlinopathy also referred to as LGMD2B LGMDR2 Miyoshi Myopathy 1 WHAT IS DYSFERLINOPATHY. LGMD2BLGMDR2MIYOSHI MYOPATHY 1 The Jain Foundation is exploring all avenues from the laboratory bench to bedside in the quest of identifying treatments for dysferlinopathy. Our innovative approach supports groundbreaking research development of resources diagnostic and educational programs preclinical testing of promising treatments and the development of tools needed to run successful clinical trials such as a disease specific registry and outcome measures. Through the collaborative effort of the many people involved in this effort Jain Foundation staff researchers clinicians patients caregivers regulatory agencies and industry we are driving real change for those with dysferlinopathy.

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Joseph

2. What innovative strategies could the Jain Foundation explore to enhance participation in the dysferlin registry and ensure a diverse representation of individuals affected by dysferlinopathy?

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Jain Foundation Inc

As part of our new advocacy project dedicated to facilitating bidirectional awareness between researchers and people living with dysferlinopathy, we hosted a live virtual lab tour. The event was well received and energizing with approximately 90 members of the Dysferlin Registry from 19 countries joining Pam Van Ry, Ph. D.

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William

1. How can the Jain Foundation leverage patient stories and experiences to raise awareness and support for dysferlinopathy research and clinical trials?

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Jain Foundation Inc

Limb Girdle Muscular dystrophy is marked by progressive muscle fiber loss. This muscle death leads to replacement by fibrotic and fatty tissue, resulting in muscle weakness and disability. Early and accurate diagnosis is crucial for effective care planning, therapeutic options and informed genetic counseling.

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Peter

I'm so inspired by the Jain Foundation's commitment to finding a cure for dysferlinopathy! Every step we take together brings us closer to hope for those affected. 💪❤️ #OrchestratingACure

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Renee

Incredible work by the Jain Foundation! The dysferlin registry is such a vital resource for our community. Let’s spread the word and support this movement! 🌍✨ #DysferlinRegistry #TogetherForACure

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