We know that there are many families affected by rare diseases and disabilities who are struggling with the cost of living crisis… and we want to help you.

That’s why, working alongside our partners, we’ve created a list of resources to help you at this challenging time. We have also interviewed individuals and organisations to hear about people’s experiences during these tough times.

Please check out the information below. Or if there is something else we haven’t covered that you feel like we may be able to help with, please don’t hesitate to contact us.

 
 

Let us help you

 
 

Our experiences

Click on each individual's image to read their stories and how they are coping during the cost of living crisis.

 
 

Read about the organisations

 
 

What we've learned

Our recent survey around cost of living and the impact on individuals and organisations in the rare disease and disability community highlighted very real issues with many being amplified for those affected by rare disease and disability. The following statistics are live and will update as we receive more data so please do complete a questionnaire and share your own experiences. This gives us a constantly changing and reflective overview of what issues are most relevant to organisations and individuals particularly with rare diseases and disabilities during the cost of living crisis.

70%


say living with a rare disease or disability makes everything more expensive.

“Disability Living Allowance only covers the basic cost of rent and food for my daughter; we have to support her with buying clothes and toiletries amongst other things.”

100%


of respondent organisations have experienced people verbalizing a difficulty in reaching services during the cost of living crisis.

Food & fuel costs are the things organisations have found people need help with most.

52%


of respondents with a rare disease / disability or dependent(s) with rare diseases or disabilities say their mental health has got worse over the last 12 months.

60%


of individuals who completed our survey say they socialise less now than 12 months ago.

73%


of individuals filling out our survey have sometimes or regularly struggled financially to afford basic things (such as rent, utility bills, food and clothing.)

“We can no longer afford holidays or family days out together. We are just trying to get by each month.”

“Whilst we have always offered advice and advocacy, usually we have been able to help with a quick phone call, now we are undertaking much more intense advocacy support, writing letters of support, working with local health and social care teams, fighting for individuals to get basic help."

 
 

Tell us of your experiences

By filling in a survey you will actively affect the statistics and give a broader perspective on what matters most during the cost of living crisis.

 
 

Get involved

 
 

Rare Navigator

At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.  

Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.

 
 

We work closely with national and local health and social care providers to ensure that our 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.

Learn more here or for more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007

 

Cost of living webinar by Rare Beacon

Beacon for rare diseases held a two-part webinar which explored how rare disease patient groups can navigate the cost of living challenges including funding priorities and managing risks. This useful resource, aimed at patient group leaders is available below:

 

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