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21st VPS13 Forum: Putting Your Questions First
Once a year the VPS13 Forum takes a different format and the patients, their families and carers take the centre stage.
by Despina Dinca

VPS13 Forum logo

Instead of scientific talks, the 21st VPS13 Forum, held on 28 April 2025 focused entirely on questions submitted by people living with VPS13A and XK diseases, their families, and carers. 

 

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Research We Fund!
New research sheds light on muscle weakness in VPS13A disease
by Professor Lucia De Franceschi & Despina Dinca

Professor Lucia De Franceschi

Back in February, we shared a behind-the-scenes look at an important research project from Professor Lucia De Franceschi’s lab at the University of Verona. Her team has been investigating how VPS13A disease (also known as chorea-acanthocytosis) may contribute to early-onset muscle weakness — a symptom experienced by many patients, yet still poorly understood. 

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More Research We Fund!
XK Disease Brain Lipid Study: Understanding Changes in Brain Fats Linked to XK Disease
by Ruth Walker

Ruth Walker sends this update on research being conducted at the Icahn School of Medicine at Mount Sinai in NYC.

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An E-gathering of XK Patients
XK Patients and Family Members Recently Met via Zoom
by Joy Willard-Williford

Joy Willard-Williford shares news of a recent online gathering of XK patients and their loved ones.

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Symposium on NBIA
Renewed relationship with the neuroacanthocytosis field
by Professor Emeritus Adrian Danek

Professor Emeritus Adrian DanekNeurodegeneration with Brain Iron Accumulation (NBIA) denotes a heterogeneous group of conditions, among them PKAN (Pantothenate Kinase associated Neurodegeneration). Patient blood may also show increased numbers of acanthocytes and PKAN may thus be considered a type of neuroacanthocytosis (NA). 

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A New Chapter: Launching Our 2025–28 Strategic Plan
An exciting milestone in the life of NA Advocacy!
by Despina Dinca

Business plan 2025-28 for NA Advocacy (cover of the document)

We’re proud to share an exciting milestone in the life of NA Advocacy: the launch of our new 2025–28 Business Plan and supporting strategies

 

These plans are the result of months of reflection, collaboration, and careful planning, designed to carry our charity forward with purpose, clarity, and resilience. At the heart of all three documents is our enduring mission: to improve the lives of people affected by neuroacanthocytosis (NA) syndromes through awareness, support, and research

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Growing the Future
Why students matter in rare disease research
by Despina Dinca

As much as we sometimes focus on the present moment and immediate support for our community, looking towards the future is also very important. We are grateful to the scientists and clinicians who are looking into our conditions and have been with us for a long time, and we are also keen to connect with the next generation interested to take their research further and further. 

 

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In this issue
TOP STORY - Announcing Upcoming 12th International Meeting
21st VPS13 Forum: Putting Your Questions First
Research We Fund!
More Research We Fund!
An E-gathering of XK Patients
Symposium on NBIA
A New Chapter: Launching Our 2025–28 Strategic Plan
Growing the Future
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