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skip to main content skip to navigation advocacy for neuroacanthocytosis patients an ultra rare disease home patients clinicians/researchers welcome to the advocacy for neuroacanthocytosis poster session kyoto symposium 2006 doctors ruth walker and adrian danek- champions of the advocacy fundraising plant sale edinburgh 2012 first patients/families/ carers meeting may 2016 bethesda symposium 2010 doctors and researchers patients, families and caregivers (ann arbor 2016) language english the work of the na advocacy the advocacy for neuroacanthocytosis patients was established in 2002 to support neuroacanthocytosis (na) patients and to develop research aimed at alleviation of the disease. as these diseases are so rare, patients and families frequently feel isolated and are desperate to communicate with others who have an understanding of the traumatic experience of being diagnosed with this devastating condition. patients can ask questions, share experiences and exchange information throughout the community of subscribers by going to our patients . the advocacy also publishes an e-newsletter, nanews , several times a year, that relates patients’ experiences and updates related research activity. individual patient advocates speaking eng lish , french , german and spanish are actively in contact with patients and/or their families. volunteers with varied skills from translation, bookkeeping, marketing and working with social networking media are contributing to find ways of building support for na patients and research. please contact ginger if you wish to participate. prof. adrian danek of ludwig-maxmilian's universitaet, munich, chairs the advocacy board of fellows. ginger irvine manages the day to day affairs of the advocacy. what is na? support us our patients patient gallery neuroacanthocytosis research research grants na newsletter library symposia contact us "searching for clues to a cure" [email protected] uk charity registration 1133182 +44 (0) 20 7937 2938 website design by ben mango website admin

URL analysis for naadvocacy.org

http://www.naadvocacy.org/#main-content
http://www.naadvocacy.org/patients
http://www.naadvocacy.org/symposia
http://www.naadvocacy.org/es/bienvenido-la-ong-apoyo-los-pacientes-con-neurocantocitosis
http://www.naadvocacy.org/cliniciansresearchers
http://www.naadvocacy.org/es
http://www.naadvocacy.org/neuroacanthocytosis
http://www.naadvocacy.org/newsletters
http://www.naadvocacy.org/pt-pt
http://www.naadvocacy.org/contact-us
http://www.naadvocacy.org/ja
http://www.naadvocacy.org/research-grants
http://www.naadvocacy.org/pt-pt/bem-vindo-%c3%a0-advocacia-para-neuroacantocitose
http://www.naadvocacy.org/research
http://www.naadvocacy.org/support-us
benmango.co.uk

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WHOIS LIMIT EXCEEDED - SEE WWW.PIR.ORG/WHOIS FOR DETAILS

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