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Press release Jan 05
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Eurochromnet Newsletter
The Eurochromnet Newsletter exchanges information about
support groups for rare chromosome disorders in Europe and related items that
are interesting for people who are involved in rare chromosome disorders.
Subscribers and authors are support groups, individuals, medical experts and
others who are interested in mutual communication and new developments.
The Eurochromnet Newsletter started in January 2005. It is
published 10 times per year in pdf and distributed via e-mail.
Old issues are stored on this page. The last issue is nr 10, November-December
2007.
Content:
-
Eurochromnet Newsletter 10, published
21 November 2007. In this issue:
- Thank you
- Translation Leaflets
- Emanual Syndrome: A Questionnaire Study
- European Chromosme 11 Network: Board meeting near Trieste
- Partners, meetings, editorial
Top
-
Eurochromnet Newsletter 9, published
31 October 2007. In this issue:
- Leona Families' meeting
- Eurochromnet and European Conference of Rare diseases
- Partners, meetings, editorial
Top
-
Eurochromnet Newsletter 8, published
22 September 2007. In this issue:
- Sad news but optimistic future
- Unique members weekend in Landia
- Trisomy 8 Mosaicism
- Meetings, partners, editorial
Top
-
Eurochromnet Newsletter 7, published
24 July 2007. Sent to subscribers. In this issue:
- Unique leaflets: translation into French
- Zeldzaam at new organisation
- First Leaflets by Syndrdome for Valentin Apac, France
- 4th Convention of families with Rare Chromosome
disorders in Poland
- Update Website Chromosome Help-Station
- 11q: Who is Who in pictures
- Partners, meetings, subscription
Top
-
Eurochromnet Newsletter 6, published
24 June 2007. In this issue:
- Eurochromnet meeting June 1st and 2nd 2077,
Scandinavia
- And after the meeting...
- Ecaruca - building on the network for the future
- Eurogentest - a Network of Excellence for Genetic
Testing in Europe
- Partners, meetings, subscription
Top
-
Eurochromnet Newsletter 5, published
19 May 2007. In this issue:
- Naomi Straus, twelve years old who has
Wolf-Hirschhorn syndrome
- Shaeldne kromosomafvigelser
- Annual Meeting of the German Angelman group
- Partners, meetings, subscription
Top
- Eurochromnet Newsletter 4, published
22 April 2007. In this issue:
- Lennard Kroeske: Unbalanced Translocation Dup13q,
Del9p
- Ten years 11q! Theme: 11q Life Management
- Two movies about Rare Chromosome Disorders in Poland
- Eurochromnet meeting 1-3 June 2007: final details
- Partners, meetings, subscription
Top
- Eurochromnet Newsletter 3, published
19 March 2007. In this issue:
- Victor, a child unlike others
- Eurordis start support for mailing lists
- Association Valentin in France for people with
chromosome disorders
- Partners, meetings, subscription
Top
-
Eurochromnet Newsletter 2, published
19 February 2007. In this issue:
- How an Italian family found their way to the 11q
Network
- Eurochromnet Newsletter translated into German!
- Ecaruca update
- Agrenska, a Centre of Competence in Rare Diseases in
Sweden
- Partners, meetings, subscription
Top
-
Eurochromnet Newsletter 1, published
16 January 2007. In this issue:
- We were alone... Now we are a lot. 1st
International Congress Ring 14
- Rare Disease Patient Registries: an Essential
Tool in the Development of Therapies
- Eurordis'2007 Photo Contest: On your marks -
Point - Shoot!
- At last... The Ring 14 conference
- Partners, meetings, subscription
-
Traduction
- Translation into French
-
Übersetzung
- Translation into German
Top
-
Eurochromnet Newsletter 10, published 20 November 2006.
Sent to subscribers. In this issue:
- Frambu, A centre for Rare Disorders in Norway
- Meeting 2007 in France, X and Y Syndromes
- Meet Tomellon, the Future in Greece
- Initation Eurochromnet Meeting 2007
- 1st Family Day Valentin Apac France
- Partners, meetings, subscription
-
Traduction
- Translation into French
Top
-
Eurochromnet Newsletter 9, published 16
October 2006.
In this issue:
- 12th Annual Meeting Angemal Self Help Group Germany
- Changes fee accepted
- Journeys out of Isolation - Eleanor's Story.
- Inv dup del 8 p
- From a grandmother
- Partners, meetings, subscription
-
Traduction
- Translation into French
Top
-
Eurochromnet Newsletter 8, published
14 September 2006. In this issue:
- The Story Of My Life By Agnieszka, mother of Piotruś (Poland)
- Fee 2007
- Information (11q, leaflets, etc)
- The Erfocentrum: when people need information on genetic
or congenital conditions or other genetic matters
- Partners, meetings, subscription
-
Traduction
- Translation into French
Top
- Eurochromnet
Newsletter 7, published
17 July 2006. In this issue:
- Eurochromnet Logo
- More improvements
- Adrianna
- 1st International Congress Ring 14
- Eurordis, voice of all rare disease patients in
Europe
- Partners, meetings, subscription
- Traduction
- Translation into French
Top
- Eurochromnet
Newsletter 6, published
15 June 2006. Sent to subscribers. In this issue:
- Network Charge
- VSOP's Pauline Evers in EGAN
- Deletion 1p36
- Orphanet
- Partners, meetings, subscription
- Traduction
- Translation into French
Top
- Eurochromnet
Newsletter 5, published
15 May 2006. Sent to subscribers. In this issue:
- 11q board members at the Eurordis Conference
- Valentin Apac 4th symposium on rare chromosomal
disorders
- Kennedy Institute - National Eye Clinic, Denmark
- Unique's new website
- Partners, meetings, subscription
- Traduction
- Translation into French
Top
- Eurochromnet
Newsletter 4, published 13 April 2006. In this issue:
- Shaun and Chromsome 22 Central
- Organisations for rare chromosome disorders
- ECA
- NORD Online
- Outcomes questionnaire Eurochromnet: Small Newsletter,
High Impact
- French speaking association Cri-du-Chat
- Booklets Cri-du-Chat and 48, xxyy
- Partners, meetings, subscription
Top
- Eurochromnet
Newsletter 3, published 16 March 2006. In this issue:
- "Building bridges of hope", theme of the 4th
international conference on SMS
- Conference GEN, Poland
- Meeting Valentin Apac, France
- Recent developments on 'Ring 14'
- Living with an extremely rare chromosome disorder -
maternal uniparental disomy 14
- What is uniparental disomy
- Meetings
Top
- Eurochromnet
Newsletter 2, published 17 February
2006. In this issue:
- The Ring Chromosome 20 Foundation; First Fundraising
Reception
- Leona's International Contacts
- New Design 11q Website
- Tetrasomy X
- A Life in the Day of Lucy
- Meetings
-
Translation
into French
Top
- Eurochromnet
Newsletter 1, published 23 January 2006.
Sent to subscribers. In this issue:
- AISiWH, the Italian Association for Wolf Hirschhorn
- History of Unique Denmark
- Meeting Klinefelter, Triple X, Double Y in France
- Photo Contest Eurordis
- Orphanews Europe
- Meetings
-
Translation
into French
Top
- Eurochromnet
Newsletter 10, published
15 November 2005.
Issue November-December.In this issue:
- Angelman eV, Germany
- Looking back
- Sleep problems in chromosome disorders
- Unique's 11th Annual Conference and 21st Birthday
Celebrations
- ...and ahead
- Dutch 11q meeting
- Leona eV and mourning parents
- Meetings
-
Translation
into French
Top
- Eurochromnet
Newsletter 9, published
15 October 2005.
Sent to subscribers.In this issue:
- Suzanne and chromosome 18
- Ecaruca
- Take a look through my eyes
- Meeting Zeldzaam
- Meetings
- Translation into French
Top
- Eurochromnet
Newsletter 8, published 15 September 2005.
Sent to subscribers.In this issue:
- The Ring Chromosome 20 Foundation
- New Challenges (Report 11q Conference)
- New research on XXYY Syndrome and other X&Y Variations
- A Life in the Day of a family with 1p36
- 1p36 deletion syndrome
- Meetings
- Translation into French
Top
- Eurochromnet
Newsletter 7, published
14 August 2005. In this issue:
- Eurochromnet Continued
- Succesful conference in Poland
- Update Ecaruca
- Dutch Klinefelter Association
- Meetings - webcast
- Translation into French
Top
- Eurochromnet
Newsletter 6, published
16 June 2005. In this issue:
- Leaflet 11q terminal deletion
- Eurochromnet meeting 20 June 2005
- Symposium Valentin Apac May 2005
- VSOP, Dutch genetic alliance
- Meetings
- Translation into French
Top
- Eurochromnet Newsletter 5, published
16 May 2005. In this issue:
- Fleaflets
- Antoine and chromosome 11p
- Leaflets on rare chromosome disorders
- KiDS-22q11, children with DiGeorge Syndrome
- Meetings
- Translation into French
Top
- Eurochromnet Newsletter 4, published
13 April 2005.In this issue:
- Meeting June
- Unique and Eurogentest need your help
- Valentin Apac's 3rd symposium
- Bambini Speciali - IDIC 15
- Idic EU 15
- Leaflet Idic 15
- Meetings
- Translation into French
Top
Top
Top
- Eurochromnet
Newsletter,
Issue 1, published 15 January 2005.
In this issue:
- A newsletter to improve exchange of information
- Eurochromnet: why and how
- Meet Valentin APAC
- GEN Poland opens office in Poznan
- Unique's participation in SAFE and Eurogentest
- Update on the ECARUCA project
- New publications
- Meetings
- Meet Ring 14
Top
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