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Rare Diseases Q1 2023

Benefits of collaborative care for people living with rare conditions

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Louise Fish

Chief Executive, Genetic Alliance UK

Collaborative care is essential for people living with rare conditions and their families to minimise the impact of health appointments. It will help healthcare professionals to work together effectively and provide high-quality care. 


Many rare conditions are lifelong and complex. People affected by rare conditions need support and expertise from a range of healthcare professionals such as hospital consultants, specialist nurses and physiotherapists, to name a few. This can mean having multiple appointments across different settings and on different dates. 

Collaborative care can ease pressures

For Rare Disease Day 2023, we are highlighting how well-coordinated care can make a real difference in people’s quality of life.

For example, Alstrom syndrome is an ultra-rare, life-limiting condition that affects multiple parts of the body. People living with the condition experience increasing problems as they grow older, including problems with their vision, hearing, sense of smell and poor control of their bodily functions.

There is a highly specialised service for treating Alstrom syndrome at a hospital in Birmingham delivering Alstrom syndrome clinics around six times a year through a one-stop shop model. Kez Hayat’s son, Hassan, has benefited from the coordinated care provided by the service.

These services offer hope for a better future to people living with rare conditions and their families.

Complete expertise in collaborative care

Hayat says: “Each year, we travel to the hospital for a ‘full body MOT’ (measurements, observations and tests) that takes place over two days. Over these two days, there are around 10–15 healthcare professionals involved in Hassan’s care.”

Professor Timothy Barrett is a paediatrician at the clinic. He says: “The Alstrom syndrome clinics are a tri-partite model with a specialist nurse, transition coordinator and family support worker from the charity Alstrom Syndrome UK.”

“The specialist nurse coordinates the medical aspects of care and liaises with schools to educate teachers about the medical impact of the condition. The transition coordinator supports individuals who may be moving into senior school or employment.”

“They can help families get an educational healthcare plan (EHCP) at school or claim any benefits or personal independence payments they are entitled to. The family support worker coordinates travel and accommodation for patients and families to come to the clinic.”

Helping families through rare disease care

There is a range of models for care coordination emerging, including national services for ultra-rare conditions like the Alstrom syndrome clinic or regional rare disease hubs for more common rare conditions. These services offer hope for a better future to people living with rare conditions and their families.

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