Time to Register for the 11th International Meeting on Neuroacanthocytosis Syndromes
Patients and their families encouraged to attend
by Lars Kaesnter, Despina Dinca, and Ginger Irvine

The agenda for the 11th International Meeting on Neuroacanthocytosis Syndromes is shaping up to be informative and helpful to researchers, clinicians, patients, families, and carers alike. A special track will beSaarland University Medical Center held for patients and their families and carers. The Advocacy and NA-USA are encouraging patients and their families to attend. The following special email invitation will be sent soon to those for whom emails are on file. The registration link in the body of the invitation below, however, may be used for all interested persons - clinicians, researchers, and patients.


11th International Meeting on Neuroacanthocytosis Syndromes 

15-17 September 2023, Homburg (Saar), Germany 

Dear Friend 

Are you affected by neuroacanthocytosis (NA) (chorea-acanthocytosis or McLeod syndrome) - either as a patient, family member, friend, or caregiver? 

The Advocacy for Neuroacanthocytosis Patients and Neuroacanthocytosis Advocacy USA, Inc. are helping to organise the 11th international meeting of those affected by NA. We are small charities registered in the UK and the US respectively. We support people all over the world and we welcome the involvement of all those affected by NA in advocating for awareness and research in these diseases. 

You are invited to participate in this 11th meeting with the experts from around the world. They will be sharing their knowledge of current research being undertaken to better understand the nature of the diseases, and to improve care and daily life for patients and families. The ultimate goal is to develop treatments and eventually a cure, and your participation is crucial!  

This will be an opportunity to meet others and their families and carers affected by NA. 



Location: Saarland University Medical Center 
(more details on location, accommodation and travel are on the registration page)

If you cannot attend, but are still interested in the event, please let us know. 

And if you are interested in helping our charity, we would love to hear from you from wherever you are in the world. We are always welcoming Patient Advocates who may be able to

  • translate our newsletter, NA News, in other languages 
  • contribute with their energy and expertise to advance awareness, education and support for people affected by NA 
  • organise or promote fundraising events. 

Please share this invitation with anyone you think it may be useful to. 

We look forward to seeing you in Homburg! 



Prof. Dr. Adrian Danek 
Dr Ruth Walker 

Ginger Irvine, Founder 
Susan Wagner, President (USA) 
Joy Willard-Williford, Vice President (USA) 
Despina Dinca, Charity Manager (UK) 

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