THE DIFFERENCE WE MAKE

By taking part in Super Rare, you’re showing people affected by these rare conditions that they may be rare – but they are not alone.

Here are some of the ways our tiny but mighty charities plan to support people with super rare bone marrow conditions this year, with statistics and quotes from our recent Rare Voices national report.

MENTAL HEALTH

& WELlBEING

The emotional and psychological burden can have a significant impact on a person’s life.  

“I have shrunk my world to family and mainly two friends, I am fearful of going out, and I don’t talk about my illness much to anyone.”
Survey respondent

In the video above, Lauren talks about deciding to access our emotional wellbeing support when her son was recovering from a bone marrow transplant. 

Are you finding it tough? Like Lauren, you’re not alone…

  • People living with rare bone marrow conditions are over four times more likely to be lonely than the general population.
  • 77% of parents with a child with one of these conditions reported often or always feeling anxious.
  • 27% ‘often’ or’always’ feel lonely
  • A third ‘often’ or’always’ feel isolated

We protect the emotional wellbeing of our communities

We provide access to professional psychological support, specially designed for people living with these specific rare conditions and the people who care for them.

We connect patients and parents with other people living with their condition, through online and in-person support groups and events.

We equip people with the information and expert advice they need to make living with a rare condition a less isolating experience. 

If you’re struggling, please reach out to us. We are here for you.

NAVIGATING

THE System

Super Rare means constantly having to be your own expert.

“Patients and carers are often left with the burden of keeping a clear history of both medication and test results due to the limited exchange of information across multiple disparate clinical systems. Not having this information can often lead to unnecessary duplicated tests and other potential delays and impacts to treatment.”

Kapil Gotecha, SDS UK  

In the clip above, Lauren talks about some of the challenges she and her partner faced looking after her son when he was receiving treatment, and who was there to support.

Our survey suggested that the day to day management of a rare condition is a burden for many patients and carers:

  • 54% said they would welcome more advice and support with navigating the healthcare system
  • Over half of people would like to receive additional support with keeping track of information, such as symptoms and test results
  • 22% don’t think test results are easily accessible for medical staff when needed

We’re here to guide people through their treatment odyssey

We provide trusted, up to date information about these conditions and the treatment available, including access to experts.

We’re planning brand new resources – to be published in 2024 – based on what you told us you needed in our survey.

We’re working together to call for joined up, multi-disciplinary care for all our rare conditions.

PRACTICAL

SUPPORT

Being Super Rare affects your whole life, and the lives of your family too.

“I was rejected PIP (after previously being on DLA) as they didn’t understand my condition and how it affected me.”

Survey respondent

In this video, Jovita talks about how her PNH affects everything she does in her life.

In our national Community Survey, you told us you wanted access to more information about:

  • Insurance cover
  • Travel and associated requirements
  • Ways to exercise
  • Benefit eligibility
  • Research into new treatments and clinical trials

WE’RE HERE TO HELP NAVIGATE LIFE WITH A SUPER RARE CONDITION

We’re working on ways to provide more of the information you told us you needed most in our survey, including how to get insurance and how to go on holiday.

A brand new pilot project this year will provide tailored advice to help people understand the benefits support they might be entitled to, and one-to-one help with applying.

RAISING

AWARENESS

Super Rare means explaining over and over again.

I’ve built up various 1–4-page summary guides to hand to new consultants”
Survey respondent

In this video Jovita talks about her diagnosis and how the symptoms affect her day-to-day life. By sharing stories like these, we can all help others to understand how to support someone living with a Super Rare condition. From health professionals and politicians, to employers and school teachers!

  • 59% of survey respondents disagreed that general NHS professionals (outside of the core medical team) had knowledge of their condition
  • The majority (82%) told us they felt the level of public understanding of their condition was very low, or not to exist at all. 
  • It is reasonable that the public have a lack of understanding about these very rare conditions, but this leads to people affected feeling of disheartened and isolated. Half of patients, families, and carers would welcome advice on how to explain their condition to others

WE HELP YOU EXPLAIN, AND WE SPREAD THE WORD

We’re using our report and Super Rare campaign to spread the word among healthcare professionals and decision makers about these conditions and your experiences.

We’re working on improved resources to help you explain the condition at work, to friends, to family, and at your child’s school, so your network understand better how to support you.

READ THE REPORT

The stats, facts and quotes on this page are from Rare Voices, the report our organisations published to showcase the results from our National Community Survey.

We would like to say a huge thank you to everyone who took part in the survey and told us what you want to change about living with a Super Rare condition.
READ IT HERE

LEARN MORE ABOUT THE CHARITIES

WITH THANKS TO

The Rare Voices report was funded thanks to sponsorship from Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi, and the survey was funded by sponsorship from Alexion AstraZeneca Rare Disease, Roche and Sobi. The survey development was supported by Absolute Market Research and M+F Health, and the report development was supported by M+F Health.

Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi had no editorial control over the content of the report.

The Super Rare campaign, and many of our commitments above, are possible because of support from The National Lottery Community Fund – thanks to players of The National Lottery.