Monday, 13 June 2016

DAY 13: Factor XIII Clinical Trial, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease


 DAY 13  Scleroderma Awareness Month: Factor XIII



The Rheumatology clinical trials unit at The Royal Free Hospital in London, are conducting a clinical trial to see if purified Factor XIII will be an effective treatment for scleroderma patients. 

Factor XIII is a component of the blood clotting cascade. Often, patients with scleroderma have an altered clotting ability upon wound injury, which could be a contributory factor in the production of calcinosis, as well as stiff, fibrotic vessels blocking the process. 

If you are local to the Royal Free hospital, please consider taking part in this trial.
For more information on the Clinical Trials unit and other ongoing trials, Click:  




Over the decades, I have taken part in various clinical trials, and although, some patients are not so keen to take part, I am an advocate for patients to take part in what could be discovered to be the cure! 

The trials are monitored vigorously, having been subjected to a robust criteria for design and application beforehand. 

Evidence based medicine is essential for best practice. This is timely and can be hindered by slow patient recruitment due to scleroderma being a rare disease. Specialist expert centres are crucial for not only best practice patient care, but also, best practice global medical research.

By joining together and uniting around the world, these centres can best serve the scleroderma patient in terms of improving and accelerating the research progress, combined with the Orphan drug process.

This could reduce the time taken for a drug to reach the marketplace, but is still timely in terms of years…. with time being a luxury to the scleroderma patient. 

I am extremely grateful to those scleroderma patients who took part in clinical trials to make the use of the biologic therapies, become a helpful treatment choice for scleroderma. 

Dr Anna Gill gave an update to the Factor XIII clinical trial process at the recent annual family day held at the Scleroderma Unit, May 2017. Click here to view her presentation. 





An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

Importance of an early diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here  

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here        



RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

View video, here

Preamble - here


The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. Thank You. 
#HOPE 


 

Last Update: April 2018




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