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ForwardThe Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Leukodystrophies (Podcast)
Living with a rare disease impacts individuals and their family/caregivers, both physically and mentally. This podcast will share insights and perspectives directly from Erica Barnes and provide strategies that the interprofessional health care team can utilize to better support those impacted by rare diseases such as leukodystrophies.
Systemic Mastocytosis: Diagnostic and Therapeutic Updates
This activity will review the symptoms and signs of SM, provide an overview of new and current therapies and identify SM guideline updates. The value of an interdisciplinary team–based approach along the continuum of care for affected individuals will also be discussed as a definitive step toward optimizing outcomes.
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Patient, Pompe Disease (Podcast)
In this podcast Nealie White, an individual with Pomp disease, will share her insights and perspectives, and panelists will provide strategies that the interprofessional health care team can utilize to better support people who are impacted by rare diseases.
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Lymphangiomatosis (Podcast)
This podcast will share insights and perspectives directly from Diane Bomberg and provide strategies that the interprofessional health care team can utilize to better support those impacted by rare diseases such as lymphangiomatosis.
The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Patient, Achondroplasia (Podcast)
This podcast will share insights and perspectives directly from Deborah Hecht, who is an individual with achondroplasia and a mother and grandmother of children with achondroplasia.
Indolent Systemic Mastocytosis: Clinical Approaches and Management
This on-demand webcast aims to improve diagnostic accuracy for ISM by reviewing the latest therapeutic options and emphasizing the critical role of interdisciplinary collaboration. Participants will gain valuable insights into the latest guideline recommendations, emerging biomarker data, and new treatment modalities that can significantly enhance health outcomes and quality of life.
The Diagnostic Odyssey for Individuals With Rare Diseases: Kaposiform Lymphangiomatosis and Other Lymphatic Conditions
This activity will explore recent advances in the diagnosis and treatment of KLA and other lymphatic conditions, including current clinical trials. It will also share insights and perspectives from and provide strategies to support the well-being of both the individual and their family/caregiver(s).
The Diagnostic Odyssey for Individuals With Rare Diseases: Leukodystrophies
This activity will explore recent advances in the diagnosis and treatment of leukodystrophies, including current clinical trials. It will also share insights and perspectives from individuals and their family/caregiver(s) and provide strategies to support their well-being.
The Diagnostic Odyssey for Individuals With Rare Diseases: Achondroplasia and Other Causes of Disproportionate Short Stature
This activity will explore the recent advances in the diagnosis and treatment of achondroplasia and other causes of disproportionate short stature. It will also share the importance of the interprofessional team to provide insights, perspectives and strategies to support the well-being of both the individual and their family/caregiver(s).
The Diagnostic Odyssey for Individuals With Rare Diseases: Pompe Disease and Other Lysosomal Storage Diseases
This activity will explore recent advances in the diagnosis and treatment of Pompe disease and other LSDs, including current clinical trials. It will also share insights and perspectives from and provide strategies to support the well-being of both the individual and their family/caregiver(s) and highlight the role of the interprofessional team in evaluating and improving care for patients with these conditions.