Rare Disease Day 2023!

Happy Rare Disease Day!

This day falls on the last day of February and aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers.

Watch this years film below, highlighting the inequality faced by so many:

Light up for Rare Disease Day!

Light up at 7 pm wherever you are to raise awareness for people living with a rare disease!  

Find a monument being lit up near you:
https://www.rarediseaseday.org/category/events/#type=illuminations

Find out how to light up your home:
https://www.rarediseaseday.org/downloads/lightupforrare/

COORDINATING CARE: Learning from the experiences of people living with rare conditions

We have been delighted to be involved in the COORDINATING CARE: Learning from the experiences of people living with rare conditions report which has been published on Rare Disease Day to highlight the importance of care coordination and the impact it has when this isn’t provided.

The Department of Health and Social Care are also launching their second Action Plan to implement the UK Rare Disease Framework in England.

We have been pleased to have been involved in this to ensure that patients voices are at the heart of care and support services.

Our Chief Executive, Kerry Leeson-Beevers gives her thoughts:

“We would like to thank Genetic Alliance UK for highlighting the Alström Syndrome highly specialised service as a model of good practice. Alström syndrome is an extremely rare and complex condition and we are grateful to have two centres of excellence in Birmingham. We value the partnership we have with clinicians as this enables us all to provide holistic care and support to all those affected by the condition in the UK. We know how fortunate we are, but we are very aware that more work needs to be done so that all people affected by rare conditions have access to equitable care and support.”   

A HUGE THANK YOU to our families Hassan, Kez and Prof. Tim Barrett who leads the AS Multi-disciplinary service for sharing their stories in the report.

You can download the full report from the Genetic Alliance UK website HERE

 

At ASUK we have Care Coordinators who provide support and assistance for people affected by AS and their families. You can meet one of our team, National Transition Coordinator Marie McGee who supports children, young people and their families throughout all stages of transition and transfer to adult services by following the link to a short video below:

https://www.canva.com/design/DAFb3kKHnxo/watch

 

The next Rare Disease Action Plan for the Department of Health and Social Care has also been launched on Rare Disease Day to tackle health inequalities.

Kerry has been quoted on the home page of the Gov.uk website for the action plan!

You can check out full information on the Gov.uk website:

https://www.gov.uk/government/news/england-rare-diseases-action-plan-to-tackle-health-inequalities

 

Events

Our Chief Executive, Kerry Leeson-Beevers alongside her adult Son, Kion attended the Rare Disease Day event at Palace of Westminster in London on the 28th February 2023 (see photos below).

Speakers include:

• Helen Whately, Minister of State for Social Care
• Louise Fish, Chief Executive of Genetic Alliance UK
• Person affected by a rare condition

 

Our Global Executive Director, Ann Chivers will also be taking part in the 24 Hours of Rare event and at midday on the 28th February 2023 will be virtually presenting to raise awareness of Alström Syndrome and why Patient Registries are vitally important in the care, treatment and research opportunities for those affected by Rare Conditions.

You can find out more about this virtual event on the website https://24hoursofrare.com/

There are lots of events happening all over the world… check out the Rare Disease Day website for more information
https://www.rarediseaseday.org/category/events/

 

We hope you all have a fabulous Rare Disease Day!