Welsh Rare Disease Implementation Plan

RARE FUTURE

As a Wales based orgnisation, Same but Different welcome the Welsh Rare Disease Implementation Plan which was released in June 2022. It aims to improve rare disease awareness, diagnosis and health care for patients over the next four years. Working with Senedd, NHS, rare disease groups and patients, the WRDIP is about making diagnosis and care for rare diseases a priority.

Photograph by Pixabay

There are four key areas in the plan:

1. Faster diagnosis of rare conditions 2. Increased awareness of rare conditions among health care professionals 3. Better coordination of care 4. Improved access to treatment, specialist care and medicines. The four-step plan will work together to ensure better outcomes for rare disease patients and the community as a whole. The four steps are connected,work together, each one helping the next.

Firstly, the plan aims to shorten the time it takes to get a diagnosis. This is a crucial issue in getting patients the right treatment plan in place. To enable this more testing is needed, especially whole-genome sequencing. The faster diagnosis makes a huge difference to the lives of people living with rare diseases. Currently, the average time for a rare disease diagnosis is four years, but living without answers, without having proper care in place, or not knowing what the best treatment is leaves many individuals in limbo.

Raising awareness among health care professionals speeds up diagnosis and treatment. It helps with the coordination of care moving forward and helps tie rare disease groups, patients and healthcare professionals together.

We also launched the Rare Navigator service that supports individuals and families affected by rare disease throughout their whole rare disease journey. Working with partners we look forward to assisting in any way we can to help the implementation plan achieve its aims, particularly in relation to awareness and care coordination. Effective coordination open lines of communication and closer working relationships between all parties that will help ensure treatment, care and medicines become more easily accessible. Better access to treatment and specialist care enables a better outcome for rare disease patients, offering more understanding towards their conditions, in turn, resulting in improved treatment plans and support.

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For over 7 years Same but Different has been working tirelessly to raise awareness of the impact of rare disease in the wider community as well as with healthcare providers.

To find out more about our Rare Navigator service:

CONTACT enquiries@samebutdifferentcic.org.uk

VIST THE RARE NAVIGATOR WEBPAGE