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Name of support organisation:
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Selbsthilfevereingung für Lippen-Gaumen-Fehlbildungen e.V. -Wolfgang Rosenthal Gesellschaft-
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Part of another organisation or independent:
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Independent
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Geographical limits:
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The whole of Germany |
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Organisational aims:
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To provide support for those with, and affected by cleft lip and palate (CLP). To promote knowledge about CLP and treatment possibilities. Provide help to patients hoping to get in touch with other families. |
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Governing body comprising:
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The association runs by an executive committee of 9 voluntary members (parents and affected adults). Our Head Office has 5 paid staff (one person is fully employed, the other work a couple of hours a week).
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Legal status and accountability:
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Registered charity by the German Government.
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Main activities:
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- Information provision (telephone helpline, website, magazine)
- Parent to parent support
- Visits to new born babies
- Workshops for healthcare professionals
- Advising on best care and taking on an advocacy role
- Raising general awareness
- Weekend meetings for parents, affected adults, young affected people, families with children with Pierre Robin Sequence.
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Publications:
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- 10 patient / parent booklets covering: general treatment; ante-natal diagnosis; genetics; speech; ear problems; financial support; organization information; a regular news magazine.
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Structured or informal support:
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Parent contact training scheme twice a year (weekends). |
Number of branches:
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60 volunteer branches (Kontaktadressen) around Germany.
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Number of members:
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2100 members
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Subscription cost:
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40,000 EURO for single membership
50,000 EURO for families
100,000 EURO for companies and other groups
20,000 EURO for pupils, students, unemployed persons etc. |
Number of public meetings per year:
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One general meeting, 6 to 8 various weekend meetings
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Sources of funding:
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Membership fees, donations, government - and/or - health insurance funds, fines
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Main contact details:
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Selbsthilfevereingung für Lippen-Gaumen-Fehlbildungen e.V. -Wolfgang Rosenthal Gesellschaft-
Tel: 06403 5575
Fax: 06403 926727
Website: www.lkg-selbsthilfe.de
Email: wrg-huettenberg@t-online.de |
Member of European Cleft Support Network:
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Yes
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| Number of cleft centres in Germany: |
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Approximately 50 |
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