Wednesday, 20 February 2019

Scleroderma Family Day - Saturday 18th May 2019. Provisional Programme. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Scleroderma Family Day - Saturday 18th May 2019
The Atrium, Royal Free Hospital, Pond Street, London NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME

09:30 – 10:00          Registration and Coffee

10:00 – 10:20          Welcome                             Dame Carol Black
Profs Chris Denton & David Abraham

10:20 - 10:45           New Emerging Therapies – the road ahead.
Prof Chris Denton

10:45 – 11:10          The gut in scleroderma.      Dr Charles Murray

11:10 – 11:35          Physiotherapy approaches to chronic disease.
Becky Portwood

11:35– 12:00           The bladder and urinary tract.
Mr Vibhash Mishra

12:00 – 14:15          Lunch break – see below

14:15 - 14:45           Pregnancy concerns in scleroderma.
Dr Oseme Etomi

14:45 - 15:30           International Speaker TBC

15:30                        Raffle

Lunchtime Discussions Groups /Demonstrations include:

Clinical Trials                                                       Rachel Ochiel and team

National Institute of Health Research                 Christine Menzies

Drug information/monitoring                                Jay Pang

Massage                                                   Mr Keith Hunt, Complementary Therapies

Pulmonary Hypertension Education/nursing    Sally Reddecliffe/Adele Dawson

Rheumatology Laboratory                                   Research Laboratory Staff

Scleroderma Education/Nursing                         Louise Parker/Joseph Cainap

Thermography                                                     Dr Kevin Howell

Sjögren's Syndrome                                           British Sjögren's Syndrome Assoc   


 #SclerodermaFreeWorld #RaynaudsFreeWorld #Research  

Read more, here  




To read my articles:  

Autoimmune Disease Awareness Month 2019:  



Gift in my Will, Click here 


Planning for the Future, Click here  

 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here

SCLERODERMA:


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- How to Diagnose, Click here    

This year, 2019, I am celebrating 21 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Read more, here.  

Sept 2017

Prof Chris Denton and I, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell. 

I am truly humbled and inspired by their work ethic and commitment to their patients. 
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. Read more, here     

Global Patient Profiles Campaign 2018 Index, Click here

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

NIHR Video: 'My Experience of Clinical Trials', Click here    

Becoming a Patient Research Ambassador for the NIHR, Click here    
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, Click here    


 
World Scleroderma Day 2017, 29th June, Click here   
World Scleroderma Day 2016, 29th June. Origins of the date, Click here  
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here     

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 
 
RARE DISEASE DAY: 
2019 theme: Bridging Health and Social Care.  
 
The theme to 2018 Rare Disease Day was 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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

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 overall: 
 
For optimum patient care, 3 hallmarks preside:



supported by a medicaldream team’ 
(expert specialist as the clinical lead).

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community. 
 

Raynaud's
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    
To view Thermograph Video, Click here   
To view Thermograph image, Click here   
   
My Raynaud’s reality, Click here   
 
The global Raynaud's trailblazer - Dr Howell and I, Sept 2017
 
To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here  
 
To read My ‘Invisible Disability’ experience, Click here  
 

  


Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter, You Tube, Instagram: @RaynaudsRf 

 

Follow: 
 
 


 
Twitter, You Tube, Instagram: @SclerodermaRF 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld

 

 
 
 
  April 2019. 
Scleroderma Family Day - Saturday 18th May 2019. 
Provisional Programme. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 
 
 

#RaynaudsFreeWorld #SclerodermaFreeWorld

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