Interview: Dr. Yver Discusses ASH, SerpinPC, and the Need for Novel Hemophilia Treatments
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Interview: Dr. Yver Discusses ASH, SerpinPC, and the Need for Novel Hemophilia Treatments

The American Hematology Society (ASH) held its 64th Annual Meeting in December 2022. During the Meeting, a variety of stakeholders—including physicians, researchers, and industry members—gathered to discuss research, trends, and…

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CureDuchenne Has Launched a Certified Occupational Therapist Program: An Interview with Jennifer Wallace Valdes, PT (Pt. 2)
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CureDuchenne Has Launched a Certified Occupational Therapist Program: An Interview with Jennifer Wallace Valdes, PT (Pt. 2)

Before you read on, don't forget to check out Part 1 of our interview with Jennifer Wallace Valdes, PT. In Part 1, Jennifer discusses her background, what Duchenne muscular dystrophy (DMD) is,…

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CureDuchenne Has Launched a Certified Occupational Therapist Program: An Interview with Jennifer Wallace Valdes, PT (Pt. 1)
Photo courtesy of CureDuchenne

CureDuchenne Has Launched a Certified Occupational Therapist Program: An Interview with Jennifer Wallace Valdes, PT (Pt. 1)

Occupational therapy for individuals with Duchenne muscular dystrophy (DMD) requires a unique and specialized approach to maximize benefit and reduce harm. It is incredibly important that those performing occupational therapy…

Continue Reading CureDuchenne Has Launched a Certified Occupational Therapist Program: An Interview with Jennifer Wallace Valdes, PT (Pt. 1)
CureDuchenne Starts New Occupational Therapist Certification Program to Enhance Duchenne Muscular Dystrophy Treatment
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CureDuchenne Starts New Occupational Therapist Certification Program to Enhance Duchenne Muscular Dystrophy Treatment

According to a story from Patient Worthy partner CureDuchenne, the organization has recently launched its CureDuchenne Occupational Therapist Certification Program. This program is intended to give occupational therapists advanced skills…

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How “My Rare ID” Supports the Rare Disease Community: An Interview with Jeff Lord (Pt. 2)
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How “My Rare ID” Supports the Rare Disease Community: An Interview with Jeff Lord (Pt. 2)

Before you continue, make sure you've read Part 1 of our interview, where we discussed the Lord family's story and experience with rare disease, and the development of MobiMedQR. This tool, which…

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How “Voices” Offers a New Avenue of Connection for the Chronic Illness and Rare Disease Communities

It’s no secret that being a part of the chronic illness and/or rare disease community can sometimes be lonely and isolating. Many people, while empathetic to the challenges faced within…

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SGT-001 Safety and Efficacy Data Available from IGNITE DMD Clinical Trial
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SGT-001 Safety and Efficacy Data Available from IGNITE DMD Clinical Trial

Since its inception, life sciences company Solid Biosciences Inc. has been working to develop treatment options for patients with Duchenne muscular dystrophy (DMD). According to a recent press release, the…

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This New Treatment for Mantle Cell Lymphoma has the Potential for Durable Remissions
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This New Treatment for Mantle Cell Lymphoma has the Potential for Durable Remissions

  A recent article in The American Journal of Managed Care (AJMC) heralds the approval of a third CAR T-cell therapy, called Tecartus. Kite Pharma’s cell-based gene therapy is the first…

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This New Treatment for Mantle Cell Lymphoma has the Potential for Durable Remissions
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This New Treatment for Mantle Cell Lymphoma has the Potential for Durable Remissions

  A recent article in The American Journal of Managed Care (AJMC) heralds the approval of a third CAR T-cell therapy, called Tecartus. Kite Pharma’s cell-based gene therapy is the first…

Continue Reading This New Treatment for Mantle Cell Lymphoma has the Potential for Durable Remissions
New Study Suggests Targeted Next Generation Sequencing Can Aid in Identification of Menkes Disease
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New Study Suggests Targeted Next Generation Sequencing Can Aid in Identification of Menkes Disease

  In a recent press release, biopharmaceutical company Fortress Biotech announced that their study regarding ATP7A targeted next generation DNA sequencing for Menkes disease was published in Molecular Genetics and Metabolism…

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