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S.W.A.N.
SYNDROMES WITHOUT A NAME



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.
Picture
The support group Syndromes Without a Name (SWAN) was formed in 1999 by the grandmother of a child with severe developmental delays, but no diagnosis for her condition. Over the following decade SWAN provided support and information to numerous families and saw its membership rise to 1300 members. Close links were formed with a number of health and social care professionals in the UK and with similar support groups abroad.

In 2009 the group’s founder was advised to give up her role co-ordinating SWAN because of health problems. As most SWAN members were parents of children with severe disabilities, there was no-one able to take over. With minimal resources the group faced closure and has not been operating for the last 2 years.

Early in 2010 Genetic Alliance UK secured funding to ask families affected by undiagnosed conditions to identify their priorities for the future work of the charity Syndromes Without a Name (SWAN). 149 surveys were completed and 15 interviews conducted with parents, medical professionals and staff members of other voluntary organizations.

Key findings were that undiagnosed families experience difficulties accessing help and support from various services including, health, educational and social services. Many parents reported feelings of isolation, frustration and disappointment. A general lack of empathy and understanding was felt by the majority of participants. The creation of a specific supportive service was endorsed not only by families of undiagnosed children but also by professionals and staff members of other voluntary organizations.

In 2011 Genetic Alliance UK secured funding from the Big Lottery Fund to employ a full time coordinator for 5 years to re-establish the SWAN support group. Based on the needs identified during the consultation, 3 aims were specified:

1. Develop a community of families with undiagnosed genetic conditions for mutual support and information sharing.

2. Develop a network of health and social care professionals with expertise in undiagnosed conditions.

3. Increase awareness and understanding of undiagnosed genetic conditions.

In May 2011 support for families of children with undiagnosed genetic conditions was re-established by the new support project known as SWAN UK.

The work of SWAN UK is overseen by an Advisory Committee with expertise in undiagnosed genetic conditions.

For more information, please visit http://undiagnosed.org.uk/about-swan-uk-2

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  • HOME
    • Bexley Voice Policies
    • Copyright Disclaimer
    • Website Feedback Form
  • About
    • BAME FOCUS GROUP
    • Membership >
      • Membership Form - Parents and Carers
      • Membership Form - Professionals
      • Members - Update your details
      • Facebook Group for Parents and Carers in Bexley
    • Meet the BV Team
    • Photo Gallery
  • Events
    • ASD Post Diagnosis Workshops
    • Bexley Voice Workshops
    • Pears Foundation Project
    • Zoom In
  • Information
    • Cornerstone School
    • Education >
      • EHCP's in Bexley >
        • Education, Health and Care Plans (EHCP) >
          • EHCP Videos
          • Understanding Outcomes (for EHC Plans)
      • Home Schooling
      • SEN support in Bexley
    • Legislation
    • SUPPORT >
      • Bexley's 'Local Offer'
      • Bexley Council Services
      • My Guides for parent/Carers in Bexley
      • Bexley IASS (Information, Advice and Support Service)
      • Coronavirus guidance and support
      • Early Years Support
      • Equipment and Aids
      • Financial Support
      • Getting a Diagnoses
      • Health Services
      • Hospital Admission - Emergency Core Information
      • Local Organisations
      • National Organisations
      • Support for Carers
      • SEND Transport >
        • Bexley SEND Travel Assistance
      • Short Breaks in Bexley
      • Support for Specific Needs - A-Z >
        • Autism (ASD) >
          • The NAS Transition Support Service
        • ADHD
        • Aspergers
        • Challenging Behaviour
        • Dyslexia
        • Down's Syndrome
        • Cerebra (Support with Brain and other Conditions)
        • Cerebral Palsy
        • Hearing Impairment
        • ODD (Oppositional Defiant Disorder)
        • PDA (Pathological Demand Avoidance) Syndrome
        • Syndromes without a name
        • Visual Impairment
        • Bullying - Support & Advice
    • Transition - Primary/Secondary
    • Transition - Preparing for Adulthood >
      • Access To Work Scheme
      • Advocacy for All
      • BEXLEY VOICE PARENT TRANSITION PLANNER
      • GP Annual LD Health Checks age 14+
      • Growing Up, Relationships, Puberty and sexual awareness
      • London SEN Education Mediation Service
      • The NAS Transition Support Service
      • Preparing for Adulthood - List of Contacts
      • Post 16 Options
      • Supported Internships in Bexley
    • WELLBEING
  • Support Us
    • Become a Volunteer or Trustee with BV
    • Donations and Fundraising
    • Trustee Information
    • Volunteer Information
  • Our Work
    • E-Bulletins
    • Health Focus Day - Anxiety and Behaviour Slide Packs
    • School Visit Programme
    • SUMMER 2020 VIDEO PROGRAMME
    • 'Tea & Talk' Parent/Carer Support Group
  • Use your voice
    • SEN Toolkit Parent/Carer Survey
  • Contact Us