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Educational and Advocacy films from rare disease patient groups

An easy way to familiarise yourself with a collection of different rare diseases, from the patient perspective

CEREBROSPINAL FLUID LEAKS

CSF Leak Association
Cambridge Rare Disease Network - Resources | Educational films 1
PITT HOPKINS SYNDROME

Pitt Hopkins UK
Cambridge Rare Disease Network - Resources | Educational films 2
G03.9 ADHESIVE ARACHNOIDITIS

Arachnoiditis Int
Cambridge Rare Disease Network - Resources | Educational films 3
MCAS:  HIDING IN PLAIN SIGHT

Mast Cell Action

Cambridge Rare Disease Network - Resources | Educational films 4

TWIN SISTERS & CVID

IPOPI

Cambridge Rare Disease Network - Resources | Educational films 5

ANGELMAN UK & ME 

seespeakhear.com

Cambridge Rare Disease Network - Resources | Educational films 6
MdDS: IGNORANCE ISN’T BLISS

House4balance

Cambridge Rare Disease Network - Resources | Educational films 7

FINDING HELP & HOPE

Menkes dISEASE

Cambridge Rare Disease Network - Resources | Educational films 8

USP7 Tess is Not Alone 

USP7 Foundation

Cambridge Rare Disease Network - Resources | Educational films 9

UNDIAGNOSED CHILDREN’S DAY

Genetic Alliance UK

Cambridge Rare Disease Network - Resources | Educational films 10

OUR LEGACY

The CATS Foundation

Cambridge Rare Disease Network - Resources | Educational films 11

DANIAL,  AARSKOG SYNDROME

The Aarskog Foundation

Cambridge Rare Disease Network - Resources | Educational films 12
DIAMOND BLACKFAN ANAEMIA 


DBA UK
Cambridge Rare Disease Network - Resources | Educational films 13

UNSEEN ME

Vasculitis patient

Cambridge Rare Disease Network - Resources | Educational films 14

Genomics and Genetics Educational films

Cambridge Rare Disease Network - Resources | Educational films 15

100,000 Genomes Project

Alex’s Story

Cambridge Rare Disease Network - Resources | Educational films 16

100,000 Genomes Project

Arthur’s Story

Cambridge Rare Disease Network - Resources | Educational films 17

100,000 Genomes Project

Musa’s Story

Cambridge Rare Disease Network - Resources | Educational films 18

100,000 Genomes Project

Jessica’s Story

Cambridge Rare Disease Network - Resources | Educational films 19

Genetic Counselling in Action

Taking a Family Tree

Cambridge Rare Disease Network - Resources | Educational films 20

Genetic Counselling in Action

Genetic Risk Assessment

Cambridge Rare Disease Network - Resources | Educational films 21

Genetic Counselling in Action

Getting consent 

Cambridge Rare Disease Network - Resources | Educational films 22

Genetic Counselling in Action

Giving Testing Results

Cambridge Rare Disease Network - Resources | Educational films 20

Genetic Counselling 

Family Communication

Cambridge Rare Disease Network - Resources | Educational films 20

Genetic Counselling 

Follow Up

Cambridge Rare Disease Network - Resources | Educational films 25

Genetics: Music of Life

De Novo

Cambridge Rare Disease Network - Resources | Educational films 26

Genetics: Music of Life

3 Outcomes from a Test

Cambridge Rare Disease Network - Resources | Educational films 27

Music of Life

X-Inheritance

Cambridge Rare Disease Network - Resources | Educational films 28

Music of Life

Recessive Inheritance

Cambridge Rare Disease Network - Resources | Educational films 29

Music of Life

Dominant Inheritance

Cambridge Rare Disease Network - Resources | Educational films 30

Paula’s story – stem cells and brain repair

Cambridge Rare Disease Network - Resources | Educational films 31

The 100,000 Genomes Project

Test results

Cambridge Rare Disease Network - Resources | Educational films 32

Socialising the Genome

My Genome

Cambridge Rare Disease Network - Resources | Educational films 33

Socialising the genome

DNAzing

Cambridge Rare Disease Network - Resources | Educational films 34

Socialising the Genome

Gene Deck Shuffle

Cambridge Rare Disease Network - Resources | Educational films 30

Socialising the Genome

Glitch

Cambridge Rare Disease Network - Resources | Educational films 36

Socialising the Genome

Reasons to be Cheerful

Cambridge Rare Disease Network - Resources | Educational films 37

socialising the Genome

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