Living with a rare disease or disability during the cost of living crisis can be challenging. We have put together a centralised resource hub where you can find relevant organisations that can assist with various aspects of life. On this page you can find organisations that offer help and advice for your family and household. Scroll down to see links that you will find useful or you can return to the cost of living page to navigate to other resources.

Flintshire School uniform exchange offers unwanted or unused school uniform for sale in Nightingale House Hospice shops throughout Flintshire at a fraction of high street prices.

Wellchild have listed some national organisations who provide grants for equipment, therapy and respite for children with disabilities in the UK. They have also included some other tips to help you get funding for the equipment or therapies that your child needs.

The Cerebra Innovation Centre (CIC) - designs and builds innovative, bespoke products to help disabled children discover and engage with the world around them. All designs start as a bespoke one-off solution to direct requests from parents and carers struggling to find the right piece of equipment to make their child’s life easier, more inclusive, and more fun. The products are created free of charge by the CIC team.

REMAP is a UK charity providing custom-made equipment, free of charge for people with disabilities. Their vision is to create a world where every single person with a disability can get the help they need, to be able to do what they want through custom-made equipment. There are 65 branches across England, Scotland and Wales.

DEMAND (Design and manufacture for disability) offer a range of services including custom product design for people of any age with a disability. On their website DEMAND say “We are ready to put our minds to any challenge that comes our way, whether the request is from a parent, carer, health professional or directly from someone with a challenge they’d like to overcome. We know that not every problem can be solved with equipment, but we draw on our wealth of engineering and technical knowledge to help whenever we can”.

Skiggle offer support for disabled individuals, by funding and operating a unique round-the-clock SOS emergency alert service. This provides a place for people to turn to if they urgently need a piece of equipment, feed, or disability care product. All you need to do is sign up to join the skiggle community and if someone within your geographical area puts out a call for help, you will be alerted and could provide a lifeline for another person in the disabled world. You never know when you might need someone’s help yourself. Skiggle also runs an online marketplace where people can safely give away and distribute disability care products and equipment and a Facebook forum where people can join for daily help, support and advice.

Whizz Kids is a UK charity which provide high-quality, personalised equipment for young people (up to 25 years old) who need wheelchairs. They also offer activity days out.

Bugzi is a powered wheelchair loaned for FREE for children up to about 6 years old.

Bugzi is primarily an indoor chair provided free of charge to young children in the UK. It can be used in any similar environment – your home; nursery or school playground; museum; play group or play centre; garden; local park playground; shopping centre; etc. MERU ask for a £100 deposit when the application has been accepted, and this money is refunded at the end of the Loan scheme when Bugzi has been retuned.

React – Rapid Effective Assistance for Children with potentially Terminal illness is a charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK. React may supply a wide range of equipment from specialist wheelchairs, beds, baths and mobility aids, to essential everyday homecare items like pushchairs and domestic appliances. This may include educational equipment to ensure a child’s developmental needs are met; React Holidays at one of React’s mobile holiday homes, funeral expenses and memorial headstones.

The Hospital Saturday Fund – will consider giving grants to individuals within the United Kingdom and Republic of Ireland.

Partial or full grants are considered for the following:

Specialised mobility equipment, wheelchairs, mobility scooters, car adaptions, medical appliances and aids, hearing aids, nebulisers, specialised vision aids, specialised computer equipment, therapeutic equipment/treatment, orthopaedic beds, mattresses or pillows, riser /recliners chairs, lift hoist/aids.

Physiotherapy, Hydrotherapy, Acupuncture, Speech Therapy, Osteopathy, Chiropractic treatment, Reflexology, Massage Therapy and Aromatherapy.

Home adaptations, walk in showers, accessibility adaptations to bathrooms, access ramps, non-slip flooring, stair lifts.

When You Wish Upon a Star has a simple mission, to grant the Wishes of children living with a life threatening illness. Some children Wish to be a fairy princess or soldier for the day, meet celebrities or sporting heroes that range from the Red Arrows to Mary Berry and others Wish for a laptop to keep in contact with their friends and family whilst in hospital. One of their most popular Wishes remains the exciting opportunity to swim with dolphins and meet all their favourite characters in Disney World, Florida. In addition to their Wishes throughout the year, they also organise a number of days out and treats for the children like Harry Potter-themed trips on-board the beautiful Belmond Northern Belle train. Every December the charity also enables hundreds of children to swap hospital beds for sleigh rides transporting them away from appointments, treatments and injections to the winter wonderland of Lapland in Finland on board our Santa Express flights.

Rays of Sunshine is a national charity that brightens the lives of seriously ill young people and their families by granting wishes and providing ongoing support in hospital and within the community.

The Dream Factory - aim to do everything possible to grant a child’s dream, which could be to meet their favourite celebrity, their favourite sporting hero, live the lifestyle of a millionaire for the day, own a laptop, or the latest mobile phone. They could choose to take a magical trip to Lapland or Euro Disney or to be a princess for the day. No wish is too small.

Willow believes that every moment should be precious and are dedicated to helping young adults take much needed time out from the reality of living with serious illness, creating magic moments that become lasting memories. From Special Treats, little boxes of joy, to Special Days at Home for all the family. From fun-packed Special Days Out to quiet Special Breaks away from it all; Willow offers the chance to meet heroes and legends or the opportunity to fulfil a lifelong dream. To be eligible for support from Willow, applicants must be:-

• Aged between 16 and 40 years old (inclusive)

• Receiving active treatment for a life threatening illness, or within 6 weeks of final treatment

• Receiving treatment/care for a degenerative or palliative illness

• A resident in the UK

• Have not received support from Willow previously (includes Special Days and Special Treats

Cerebra Book Library – is a specialist postal library containing a wide range of books for both adults and children. The service is free for anyone in the UK caring for a child with a brain condition. They also have e-books and audio books.

Cerebra sensory toy library - has a variety of sensory toys for all sorts of different needs. Whether your child is sensory seeking or sensory sensitive they have a kit that’s suitable. If they’re learning about cause and effect or have limited mobility, one of their switch toys could be just the thing for them. You can borrow one item at a time for 28 days. They are delivered and collected by courier, which Cerebra arranges for you. The service is free for anyone in the UK caring for a child with a brain condition and is easy to use.

Newlife - offers the free loan of specialist toys to families who have disabled and terminally ill children. The Play Therapy Pods are a box of sensory toys, that can be delivered direct to your door. The service is not means tested, so specialist play pods are provided on the basis of need.

Please do share any useful websites or support organisations focusing on cost of living so we can add them to the resources. Your support is very much appreciated.