Support for those affected by rare diseases

Welsh charity Same but Different strives to make a positive difference to the lives of those affected by rare diseases and has recently expanded its service area to include Liverpool.

Through a service called Rare Navigator, the charity offers emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.

This individualised support and advocacy service aims to ensure that each family is able to access the level of support they require. The Same but Different team can help people to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how they may affect your family.

Same but Different works closely with national and local health and social care providers, to ensure that families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

The support area of North Wales has now been expanded to include Liverpool. Even if the team is unable to help you, they will put you in touch with colleagues in disease specific support organisations.

Katy Parry, the Rare Navigator covering the Liverpool area, has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:

  • Home visits (whenever necessary)
  • Supporting families to understand the choices of care that may be available
  • Helping families to access their local healthcare services
  • Liaising with local health and social care teams, which may include occupational therapists, speech and language therapists and social workers
  • Working with schools and teaching staff to provide information to support children in attending and achieving at school
  • Accompanying individuals and families to clinic appointments or meetings

For more information on the service, please contact enquiries@samebutdifferentcic.org.uk or call 01352 757007.

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