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Patient insights

CRDN collaborate with 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 and Pharmaphorum Magazine to provide a platform to share their patient journey, raising awareness and informing pharma professionals of particular rare conditions and the challenges those affected face. Browse this collection of Patient Insight articles and contact jo@camraredisease.org if you’d like to share your story.  

Eilidh from CRDNs Unique feet group

Ophelia 

Schinzel – Giedion Syndrome

March 2021: PharmaFocus magazine

Georgina Hart

Georgina Hart

 Friedrich’s Ataxia

January 2021: PharmaFocus Magazine

Ring20 pharmaphorum

Allison Watson

Ring Chromosome 20 Syndrome

November 2020: Pharmaphorum Magazine

Mandy Sellars

Mandy Sellars

PIK3CA-Related Overgrowth Spectrum (PROS)

November 2020: PharmaFocus Magazine

Pharmaphorum-The-urgent-need-for-education

Michelle Bamber

Mitochondrial disease

December 2020: Pharmaphorum Magazine

Aarskog Foundation logo

Michelle Erskine

Aarskog Syndrome

October 2020: Pharmaphorum Magazine

Pharma Focus Article Timothy Syndrome

Calvin Muir

Timothy Syndrome

October 2020: Pharmafile Magazine

Pharmaphorum-Searching-for-answers-in-rare-epilepsy

CHARLES STEWARD

Rare Epilepsy

October 2020: Pharmaphorum Magazine

Pharmaforum Alan Thomas - Ataxia

ANDI THORNTON

Spinal Muscular Atrophy

July 2020: PharmaFocus Magazine

Pharmaforum Alan Thomas - Ataxia

Alan Thomas

Cerebellar Ataxia

June 2020: PharmaFocus Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 1

Tristan Enderle

Russell-Silver Syndrome

May 2020: PharmaFocus Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 2

Darren Taylor

Dercum’s Disease

April 2020: PharmaFocus Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 3

Carole Scrafton

EDS & other rare conditions

December 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 4

Lisa Pascoe

Desmoid Tumour

November 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 5

Vaila Morrison

Ultra-rare condition KAT6A

July/August 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 6

Polly Moyer

Mal de Debarquement Syndrome

June 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 7

KATY BAKER

Scimitar Syndrome

May 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 8

Rebecca Pender

Ultra rare Inv Dup Del 8p

April 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 9

Dan Jeffries

Acromegaly & Wyburn Mason-Syndrome   

March 2019: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 10

Kay Parkinson

Alstrom Syndrome

December 2018: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 11

Helena Baker

Fibular Hemimelia

November 2018: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 12

Niamh ni Ruari

Cell Histiocytosis

October 2018: Pharmafile Magazine

Cambridge Rare Disease Network - Pharma Journals Collaboration: Patient Insights 13

Su Morris

Behçet’s Disease

August 2018: Pharmafile Magazine

Atarim

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