Page 4 - CamRARE | Unique Feet - Impact Report 2022

WHAT IS RARE DISEASE?

Individually rare...
» Rare diseases are complex, chronic disorders which commonly affect multiple

organ systems and are often life-threatening

» A single rare disease can affect up to 30,000 people in the UK, or just one (1)

... collectively common

» One in 17 people will develop a rare disease at some point in their life,
meaning that 3.5 million are affected in the UK alone (2)

Rare disease support networks

Rare Disease UK is a national umbrella charity which campaigns for
and supports people with rare diseases. It is housed by Genetic
Alliance UK, an alliance of over 200 patient organisations. Additional
support for those without a diagnosis is provided by SWAN UK
(syndromes without a name). These charities provide support on a
national level and have some regional annual meetups.

Other national organisations providing umbrella support for families
include Metabolic Support UK. Unique and Gene People.

There are more than 130 disease-specific charities, some of which are
located in the UK, but most operate globally. The size of these
charities varies greatly depending on how common the condition is.
They provide valuable virtual support networks for those affected by
the same condition. Still, physical events are much more challenging
due to the wide geographical spread of families, and it can be difficult
for families to connect with people they have not met in person.
Additionally, approximately 50% of rare diseases are not supported by
a specific charity or foundation.

CamRARE attempts to fill this gap through its Unique Feet community by providing direct
support to families living with a rare condition in Cambridgeshire and the east of England,
forming a powerful regional voice to ensure their collective needs are met.

1: Rare Diseases, European Commission (https://ec.europa.eu/info/research-and-innovation/research-area/health-research-and-innovation/rare-
diseases_en) 2: The Rare Reality 2016, Rare Disease UK (https://www.raredisease.org.uk/our-work/the-rare-reality-2016/)
3: Specific Rare Disease Charities, Rare Care UK (https://rarecareuk.org/other-support/)
4: Rare Facts, Global Genes (https://globalgenes.org/rare-facts/)
5: Mental Health Report 2018, Rare Disease UK (https://www.raredisease.org.uk/our-work/living-with-a-rare-condition-the-effect-on-mental-health-
2018/)