Raynauds Scleroderma Global Patients: Scleroderma, Raynaud's Family Day 2017, The Royal Free Hospital, London, UK.

Sat 13^th May 2017 saw the annual 'Scleroderma family day' being held in the atrium at the Royal Free Hospital, London.

The annual family day is devoted to illuminating and helping ease the scleroderma patients’ experience.

It is with great thanks to Prof Chris Denton and his medical colleagues for giving up their time and expertise for this day.

The event is free to attend, accessible, and, open to anyone with an interest in scleroderma.

Here is this year’s, 2017, programme:

09.30 – 10.00 Registration

10.00 – 10.15 Welcome Dame Carol Black

10.15 – 10.45 Review of Research Progress Prof Chris Denton

10.45 – 11.10 Lessons from Sjogren’s Syndrome: Dr Elizabeth Price

Click here

11.10 – 11.30 Factor XIII Dr Anna Gill.

Click here

11.30 – 11.50 Having a stem cell transplant: patient and Dr Perspective,

Prof Chris Denton

Click here

11.50 – 12.10 Psychological aspects: Dr Mari Campbell

14.00 – 14.30 Personalised medicine: Dr Corrado Campochiaro

Click here

14.30 – 15.30 International speaker

Throughout the day, different discussion groups / demonstrations are held.

Including:

Rachel Ochiel and the clinical trials team

Drug information / monitoring, Gillian Murray / Jay Pang

Skin camouflage changing faces

Mr Keith Hunt, massage

Pulmonary Hypertension Education / nursing Sally Reddecliffe / Adele Gallimore

Rheumatology Laboratory Research Thermography Dr Kevin Howell

Sadly, my tin man body kept me under house arrest again this year, and I was not able to make the travel.

May 2017.

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 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, 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

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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

INDEX

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

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th 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.

1^st 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: