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MCT-8 Deficiency Resources for Patients and Families
Welcome to the MCT-8 Deficiency Resources page.
Here, you will find valuable information, support, and tools for navigating the challenges of MCT-8 deficiency. This page includes links to important documents, advocacy groups, and other resources designed to help families, caregivers, and individuals affected by MCT-8 deficiency.
If you’re just starting your journey or seeking more information about MCT-8 deficiency, the information below provides some foundational knowledge.
Frequently Asked Questions
We have identified some common questions from patients and caregivers to provide some concerns like diagnosis, treatment options, and how the disease progresses:
Is there a cure for MCT-8 deficiency?
Currently, there is no cure for MCT-8 deficiency. Treatment focuses on managing symptoms and improving quality of life through physical therapy, nutritional support, and investigational treatments.
How is MCT-8 deficiency managed?
Management includes:
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Physical therapy to improve muscle function and prevent contractures
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Nutritional support to ensure proper weight gain and metabolic stability
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Experimental therapies that aim to regulate thyroid hormone levels
What research is being done?
New therapies are being developed to restore thyroid hormone signaling in the brain. Alera Bio is committed to researching innovative treatments that may provide hope for families affected by MCT-8 deficiency.
Where can I find support?
Families affected by MCT-8 deficiency can find support through:
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Genetic counselors and medical specialists
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Patient advocacy organizations such as the MCT8-AHDS Foundation
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Clinical trials exploring new treatment options
Resources for Families &
Healthcare Providers
We’ve compiled a selection of documents that can help guide you through understanding MCT-8 deficiency, medical care, and available support:
Support and
Advocacy Groups
Connecting with others who are going through similar experiences can provide invaluable support. Here are some key advocacy groups and organizations focused on rare diseases, including MCT-8 deficiency:
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American Thyroid Association – Provides educational resources on thyroid hormone deficiencies and related conditions and patient resources. Click HERE
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Global MCT-8 Deficiency Foundation – A dedicated organization focused on raising awareness, funding research, and providing support for families affected by MCT-8 deficiency. Click HERE
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Genetic and Rare Diseases Information Center (GARD) – A comprehensive resource for individuals affected by rare diseases, providing information on MCT-8 deficiency and other related conditions. Click HERE
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Patient Advocate Foundation – Offers financial assistance, care coordination, and other resources to help families navigate medical costs and insurance challenges. Click HERE
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Rare Disease Legislative Advocates (RDLA) – An advocacy group working on behalf of rare disease patients to influence policy decisions that improve access to treatment and resources. Click HERE
Online Communities and Support Groups
Support from others who understand your situation can be incredibly helpful. Join online communities where you can connect, share experiences, and find support:
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RareConnect – A global platform for rare disease patients and families to connect, offering forums for specific conditions like MCT-8 deficiency. Click HERE
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Facebook Groups [MCT-8 Deficiency Support Group] – A private Facebook group where families and caregivers of individuals with MCT-8 deficiency can share experiences and resources. Click HERE
Research and
Clinical Trials
Stay informed about ongoing research and clinical trials related to MCT-8 deficiency:
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ClinicalTrials.gov – Search for clinical trials involving MCT-8 deficiency, thyroid hormone therapies, and other related studies. Click HERE
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NIH Rare Diseases Clinical Research Network (RDCRN) – Learn about research networks and clinical trials for rare diseases like MCT-8 deficiency. Click HERE
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Alera Bio – See our current research and development program and register for future clinical trials. Click HERE
