Frontotemporal dementia with motor neuron disease
Synonyms: FTD-ALS | FTD-MND | Frontotemporal dementia with amyotrophic lateral sclerosis
Frontotemporal dementia with motor neuron disease (FTD-MND) is a type of frontotemporal lobar degeneration characterized by the insidious onset (between the ages of 38-78 years) of dementia-associated psychiatric symptoms (e.g. personality changes uninhibited behavior irritability aggressiveness) memory difficulties global intellectual impairment emotional disorders and transcortical motor aphasia that eventually leads to mutism in addition to the manifestations of motor neuron disease such as neurogenic muscular wasting (similar to what is seen in amyotrophic lateral sclerosis; see this term). The disease is progressive with death occurring 2-5 years after onset.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version October 2023.
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Advocacy Organizations
patriot for growth and development initiative
Patriots for Growth and Development Initiatives (PGDI), is dedicated to creating a sustainable and equitable world where everyone has access to basic amenities, quality education, decent healthcare, and good livelihoods. Our mission is to promote sustainable development, democracy and good governance, anti-corruption, and accountability, health with a specific focus on rare diseases.
Childhood Dementia Initiative
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Genetic Support Network of Victoria
The Genetic Support Network of Victoria is an organisation that supports people living with genetic, undiagnosed and rare conditions and those who support them including community and families, patient support organisations, health professionals and industry. Our vision is our community flourishing and living their best lives.
KIF1A.ORG
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Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
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