Myotonic.org

For Individuals Living with DM & Caregivers Myotonic Dystrophy …

WEBHealth Insurance Considerations for People Living with Myotonic Dystrophy in the United States: MDF created this resource to help you navigate the process of making sure your …

Actived: 7 days ago

URL: https://www.myotonic.org/resources/individuals-living-dm-caregivers

Find a Doctor Myotonic Dystrophy Foundation

WEBOne of the requests MDF gets most frequently from community members is for referrals to doctors, therapists and other medical professionals who understand …

Category: Medical Go Health

Brain Myotonic Dystrophy Foundation

WEBPatterns: DM1 is also a ‘brain disorder,’ and can cause cognitive and behavioral abnormalities which can impact quality of life. Symptoms: Cognitive and …

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Health-Related Quality of Life in DM1 Myotonic Dystrophy …

WEBThe U.S. Center for Disease Control and Prevention (CDC) defines health-related quality of life (HRQoL) as “an individual’s or a group’s perceived physical and …

Category: Health Go Health

Insurance Considerations for Myotonic Dystrophy

WEBPublic Health Insurance: Federal and State programs that offer insurance, most commonly Medicare and Medicaid, are forms of public health insurance. These …

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Understanding and Measuring Fatigue in DM1

WEBThe Myotonic Dystrophy Health Index (MDHI) is a PROM that has been incorporated into many recent clinical studies and trials and includes separate question …

Category: Health Go Health

Consensus-based Care Recommendations for Adults with …

WEBto mental health care professional for testing & follow up; patients may have limited insight into these issues – consider input from partners & family members as …

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Myotonic Dystrophy at a Glance

WEBSupport International Myotonic Dystrophy Awareness Day on Sept. 15! Get the facts about DM and help garner the attention of the wider general public, policy …

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The DMCRN Myotonic Dystrophy Foundation

WEBThe DMCRN is comprised of eight medical centers with significant proficiency in myotonic dystrophy clinical care and research. The current DMCRN sites are: The University of …

Category: Medical Go Health

Consensus-based Care Recommendations for Adults with …

WEBto mental health care professional for testing & follow up; patients may have limited insight into these issues – consider input from partners & family members as appropriate • DM …

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Current Studies and Trials Myotonic Dystrophy Foundation

WEBConditions : Myotonic Dystrophy Type 1. Location: Multiple sites. Sponsor: Harmony Biosciences, LLC. Contact: Ann Adee at 773-383-6258, Michelle Manuel at 847-903 …

Category: Health Go Health

Myotonic Dystrophy Publications Myotonic Dystrophy Foundation

WEBMyotonic Dystrophy Publications. The Myotonic Dystrophy Foundation (MDF) publishes resources for people living with myotonic dystrophy (DM), their families, …

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How Common is Myotonic Dystrophy in the United States

WEBHe dedicates significant time each week to laboratory research, and is part of a team at VCU Health working to advance the treatment of genetic muscle disorders, with a …

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Consensus-based Care Recommendations for Children with …

WEBRecommendations for the health care of children with myotonic dystrophy are crucial to assure that all clinicians and professionals encountering children and their families with …

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Myotonic Dystrophy Health Index (MDHI): Measuring Patient …

WEBMyotonic Dystrophy Health Index (MDHI): Measuring Patient-Reported Disease Burden Myotonic Dystrophy Patient-Centered Therapy Development Workshop 9/17/15 Chad …

Category: Health Go Health

Acceptance & Commitment: Strategies for Good Mental Health

WEBOriginally presented on September 10th,2021 as a part of the Caregivers & Self-care Track at the 2021 Virtual MDF Annual Conference. Life with DM can contribute to emotional …

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Capturing What Patients Already Know: The Development and …

WEBaspects of patient health ! Responses are provided directly by patients without required interpretation or administration by other individuals ! Can measure the severity of a …

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Health Insurance Considerations for People Living with …

WEB663 Thirteenth Street, Suite 100, Oakland, California 94612 415.800.7777 | [email protected] | www.myotonic.org. The mission of the Myotonic Dystrophy …

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Women's Health in DM/FSHD

WEBYour answers will help. Participate Today! [email protected] (585) 275-0420. Jeanne Dekdebrun, Study Coordinator Dr. Johanna Hamel, Principal Investigator. This …

Category: Health Go Health

DM and Dental Care: the Neglected Health Risk

WEBDarcy Trill, RDHAP, mobile dental hygenist who specializes in the treatment of people with disabilities and special needs in their homes, provides a compelling overview of the risks …

Category: Health Go Health

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