Wednesday 22 June 2016

DAY 22: ‪Journal of Scleroderma and Related Disorders (JSRD), Scleroderma Awareness Month‬ 2016, Raynaud's, Autoimmune Rare Disease


Scleroderma Awareness Month 
Raynaud's, Autoimmune Rare Disease

DAY 22  Scleroderma Awareness Month:  


1 Week to go until World Scleroderma Day 29th June....

To celebrate the launch of the first edition of the new 'Journal of Scleroderma and Related Disorders' and World Scleroderma Day, the editors kindly offered to Scleroderma News readers, the annual subscription to the Journal at a discounted price, for 1 week only.

I made the Journal the subject of a few blog posts, Click here 

The contents of the Journal show that there are very exciting times ahead for the global scleroderma community, by way of differing biological mechanisms and processes involved in the scleroderma disease pathway, being better understood. 

This of course, is enhanced greatly by global collaboration, making the bi-annual Systemic Sclerosis World Congress a hub of pioneering scleroderma activity. 

The next World Congress is scheduled to take place in Prague in 2020. Click here

All in all, there is still a long way to go in reaching the light at the end of the tunnel in making a Scleroderma-Free-World, but imagine that: a #SclerodermaFreeWorld.  

To read my article why global collaboration is so important to any rare disease patient, Click here  

Research is the key. Current areas of research interest, Click here
Abstracts from 2016 World Congress, Click here

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   

Becoming a Patient Research Ambassador for the NIHR, 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    

Diet and nutrition, Click here     
Raynaud's, Click here    

World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   

Why Global Collaboration is important to the Rare Disease Patient, Click here      
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  

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. 


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
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. No wages or admin costs. Thank You.

Last Update: April 2018

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