We have now started to sell the 50kr necklace. I took some with me to a conference in Punta Cana, Dominican Republic, and sold them all. Everyone loves them. They are ideal as a gift or just for yourself;)
A Patient Network Meeting will be held on 21 November, Sunday to continue the integration and empowerment of patients affected by rare paediatric neurological diseases by having their input and involvement in nEUroped.
The second day, 22 November, Monday, dedicated to Best Practices for Developing and Maintaining Patient Registries in the European Union will be an open event to nEUroped partners, Patients Network members and outside participants.
The final day of the nEUroped Extended Network Meeting, 23 November, Tuesday will be to review the work accomplished in the nEUroped project and develop the future of the nEUroped Consortium: extend the Network to members outside the project and to patient networks.
Meeting details and registration information will follow in the next nEUroped newsletter and on www.neuroped.eu. For immediate questions please contact Tsveta Schyns (firstname.lastname@example.org) and Francis P. Crawley (email@example.com) for information about the Extended Network Meeting. If you are a patient or patient representative interested in attending, please contact Anna Kole (firstname.lastname@example.org) for information on travel and subsistence reimbursement
The AHC foundation in the states has updated their website.
The Patient Network meeting will take place on Sunday 21 November in Brussels. This will be followed by a two day Extended Network meeting for patients, project partners and any other interested parities on 22 and 23 November.
Sigurdur Johannesson and Ragnheidur Hjaltadottir will be represending AHCAI during this meeting.
The Italian Association for Alternating Hemiplegia has published a new book that they call “The Italian white book for AHC”
It is very interesting and very nicely done with some new information that will make a difference for alot of parents.
AHCAI was invited to join EURORDIS ( www.eurordis.org ) for a meeting in London March 2009.
nEUroped network meeting 21 mars 2009
Introductions were made:
First there was a couple from Nederlands with 7 year old daughter with AHC and 5 year old daughter not affected. Founded the foundation in the Nederlands.
2 from Italy (Italian association)
4 from Denmark (Danish association) 2 couples that have daughters.
A couple from Iceland with a 3 year old daughter (us)
AHC family meeting in Chicago 25-27 July 2008
We (Sigurdur, Ragnheidur and Sunna) were invited by the AHC association of the United States to join them in a family meeting in Chicago. This would be a 2 days meeting with speakers from the States, Canada and France. Also a team of specialists that Dr. Swoboda from the University hospital of Utah headed would be examining the patients.
Vinsamlega kíkið við síðar. Vefurinn er í vinnslu.