SWAN
From A-buzz Forum
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SWAN | |
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| Name of Organisation: | SWAN |
| Headline: | Syndromes Without a Name |
| What We Do: | SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions
Approx 30-50% of children with special needs do not have a diagnosis. This can cause problems for families when accessing information, support and services. By sharing information, contacts, resources and stories about children with undiagnosed conditions, SWAN UK aims to: •Develop a community of families with undiagnosed genetic conditions for mutual support and information sharing •Develop a network of health and social care professionals with expertise in undiagnosed conditions •Increase awareness and understanding of undiagnosed genetic conditions (read less) Approx 30-50% of children with special needs do not have a diagnosis. |
| Area: | National
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| Town: | |
| Address: | SWAN
Genetic Alliance UK Unit 4D, Leroy House, 436 Essex Road London - UK |
| Postcode: | N1 3QP |
| Contact Person: | |
| Telephone: | 0207 704 3141
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| Facebook ID: | SWAN UK (Syndromes Without A Name) |
| Twitter ID: | @SWAN_UK
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| Email: | SWAN@geneticalliance.org.uk |
| Website: | http://swanuk.wordpress.com
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| Services Offered: | *To campaign on behalf of families who have a child with an undiagnosed condition + gain equal rights + recognition
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| Disability Type: | No Diagnosis |
| Pat Mark Status: | Not Yet Applied For
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| Related Topics: | Early Support 0-5 years, Health & Well Being, Support
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| Related Articles: | My child has a rare condition where do I go for help and support?
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| Related Organisations: | Contact a Family
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