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Cambridge Rare Disease Network - Pharma Focus Collaboration 1

Patient Experience articles

CRDN, PharmaFocus & Pharmaphorum

 

Giving patients and carers a voice within sectors which are difficult to reach is a core aim of CRDN.  Each month we connect a rare disease patient or carer with PharmaFocus Magazine or Pharmaphorum Magazine to provide a platform to share their patient journey, raising awareness and informing pharma professionals of particular rare conditions and the challenges they face.  Browse this collection of Patient Experience articles and contact jo@camraredisease.org if you’d like to share your story.

Pharma Focus Article Timothy Syndrome

Calvin Muir

Timothy syndrome

October 2020

Aarskog Foundation logo

Michelle Erskine

Aarskog syndrome

October 2020

Pharmaforum Alan Thomas - Ataxia

ANDI THORNTON

Spinal muscular atrophy

July 2020

Pharmaforum Alan Thomas - Ataxia

ALan Thomas

Cerebellar Ataxia

June 2020

Cambridge Rare Disease Network - Pharma Focus Collaboration 2

Tristan Enderle

Russell-Silver syndrome

May 2020

Cambridge Rare Disease Network - Pharma Focus Collaboration 3

Darren Taylor

Dercum’s disease

April 2020

Cambridge Rare Disease Network - Pharma Focus Collaboration 4

Carole Scrafton

EDS & other rare conditions

December 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 5

Lisa Pascoe

Desmoid tumour

November 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 6

Vaila Morrison

Ultra-rare condition KAT6A

July/August 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 7

Polly Moyer

Mal de debarquement syndrome

June 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 8

KATY BAKER

Scimitar syndrome

May 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 9

Rebecca Pender

Ultra rare Inv Dup Del 8p

April 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 10

Dan Jeffries

Acromegaly & Wyburn Mason-Syndrome   March 2019

Cambridge Rare Disease Network - Pharma Focus Collaboration 11

Kay Parkinson

Alstrom syndrome

December 2018

Cambridge Rare Disease Network - Pharma Focus Collaboration 12

Helena Baker

Fibular hemimelia

November 2018

Cambridge Rare Disease Network - Pharma Focus Collaboration 13

Niamh ni Ruari

Cell Histiocytosis

October 2018

Cambridge Rare Disease Network - Pharma Focus Collaboration 14

Su Morris

Behçet’s disease

August 2018

If we all got involved, imagine the difference we could make? Don’t just follow us, interact with us and join our thriving rare disease community! There’s lots of ways right here to begin your journey with us…

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