Scleroderma Unit Royal Free Hospital

Scleroderma Unit Royal Free Hospital Scleroderma is a rare chronic autoimmune disease affecting the vascular system and connective tissue. There is currently no cure.

Scleroderma patients are desperate for a cure and improved treatments, with many unmet clinical needs - please donate to Prof Denton's research where 100% of your donation will be used for research.
Investment in medical research is desperately needed. The Scleroderma Unit led by Prof Chris Denton is a worldwide healthcare centre of excellence for medical research. Please donate where 100% will be used for scleroderma medical research purposes only :

https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

https://royalfreecharity.org/events/scleroderma-awareness-2020/ scleroderma-raynauds

http://www.scleroderma-royalfree.org.uk/Mission_Statement.php

https://academic.oup.com/rheumatology/article/55/10/1906/2196591/BSR-and-BHPR-guideline-for-the-treatment-of

Early diagnosis is crucial to prevent irreversible life threatening damage. Professor Chris Denton studied medicine at Guy’s Hospital in London and obtained a PhD from University College London and trained in connective tissue diseases in London. Following a Wellcome Trust Advanced Fellowship in molecular genetics at the M.D. Anderson Cancer Center in Houston, USA he was an Arthritis Research UK Senior Clinical Research Fellow 2000-2010. He has published extensively on laboratory and clinical aspects of connective tissue disease and pulmonary hypertension. He leads a large clinical programme in scleroderma at the Royal Free Hospital and co-ordinates multidisciplinary care for more than 1400 patients. He was previously chair of BSR's Heberden Committee and currently chairs the UK Scleroderma Study Group (UKSSG). Although, I, Nicola Whitehill, run this page, I have set it up in the hope that it will be a vibrant community with much patient participation by way of sharing experiences of Scleroderma and the Scleroderma Unit . As well as, a helpful source of information. I am eternally grateful to Prof Denton and Dame Prof Carol Black.



blog.raynaudsscleroderma.co.uk

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http://www.scleroderma-royalfree.org.uk/

30/08/2025

Looking for the latest advances in scleroderma research and treatment? Find out more in the Insight interviews, featuring the perspectives of experts from the World Scleroderma Foundation and EUSTAR Group specialists.

18/07/2025

The Importance of Expert Specialist Centres
https://blog.raynaudsscleroderma.co.uk/2017/04/expert-specialist-centers-scleorderma.html?m=1

'Living with a rare disease without a cure, is most character building that's for sure'.

https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception

Research offers HOPE. Hope that improved treatments, better understanding and ultimately a cure will be found. NIHR Research Delivery Network

https://rdn.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-those-living-rare-diseases

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free Hospital. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team Royal Free London NHS Foundation Trust

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity:

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will : https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page : https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

https://rdn.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-those-living-rare-diseases
17/07/2025

https://rdn.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-those-living-rare-diseases

Our annual report has been published today, showcasing how NIHR funded and supported research is changing lives across the UK and globally 🎉

Read the report and find out more about how 👇
🏠 Virtual wards could support bringing healthcare into our homes
🧽 A small sponge could help detect cancer earlier
🚚 Research vans are bringing research to coastal and rural communities

And much more. Read the full report by following the link in the comments 👇

30/06/2025

June 🌻

'Living with a rare disease without a cure, is most character building that's for sure'.

https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception

Research offers HOPE. Hope that improved treatments, better understanding and ultimately a cure will be found. NIHR Research Delivery Network

https://rdn.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-those-living-rare-diseases

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free Hospital. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team Royal Free London NHS Foundation Trust.

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity:

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will : https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page : https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

29/06/2025

Happy 🥳
June 🌻

'Living with a rare disease without a cure, is most character building that's for sure'.

https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception

Research offers HOPE. Hope that improved treatments, better understanding and ultimately a cure will be found. NIHR Research Delivery Network

https://rdn.nihr.ac.uk/news/rare-disease-day-how-research-offers-hope-those-living-rare-diseases

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free Hospital. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team Royal Free London NHS Foundation Trust

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity:

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will : https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page : https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

Happy 29th June 🌻June https://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html 2015, Th...
28/06/2025

Happy 29th June 🌻
June
https://blog.raynaudsscleroderma.co.uk/2017/03/world-scleroderma-day-29th-june.html
2015, The European Parliament, Brussels. Sadly, this was my last trip abroad. The physical exertion from the travel caused a huge flare in my symptoms. Watch here:
https://www.youtube.com/live/KQimB_F2l_4?si=na_kTkiiVhnjJWKN

'Living with a rare disease without a cure, is most character building that's for sure'. Research offers HOPE. Hope that improved treatments, better understanding and ultimately, a cure will be found.

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free London NHS Foundation Trust. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team.

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies Scleroderma Unit Royal Free Hospital or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity:

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will:
https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page :
https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

🙏
27/06/2025

🙏

🌻 This Sunday marks World Scleroderma Day.

Scleroderma (systemic sclerosis) is a rare, complex and serious disease that can cause life-threatening scarring and inflammation in the lungs, kidneys and gut, not just the joints and skin. Early diagnosis and specialist care are vital, but many patients face uncertainty and risk.

For 30 years, the Royal Free London NHS Foundation Trust scleroderma unit supported by UCL in north London has cared for over 1,000 patients and led global research. The team is currently running 13 clinical trials, developing new treatments and working on ways to improve quality of life for people with scleroderma.

This progress is only possible thanks to supporters like Nicola Whitehill, who has lived with scleroderma for over 25 years. Nicola said: “Living with a rare disease without a cure is most character building, that's for sure.”

Nicola’s legacy gift to the Royal Free Charity is helping secure the future of scleroderma research.

You can support the next breakthrough, donate today: http://royalfreecharity.org/donate

Raynauds Scleroderma Awareness- Global Patients Scleroderma Unit Royal Free Hospital

26/06/2025

June 🌻
MEDICAL DREAM TEAM Infographic. Expert specialist centres are essential for best practice and patient care. A multidisciplinary team is needed due to the different complex symptoms.

https://blog.raynaudsscleroderma.co.uk/2018/04/the-importance-of-multi-disciplinary.html

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free Hospital Royal Free London NHS Foundation Trust. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team.

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity:

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will : https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page : https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

17/06/2025

Millions will take part in clinical trials under the 10 Year Health Plan which will speed up clinical research.

12/06/2025

Today I have made it to 52 years, having been told I had 15 months to live by my diagnosing doctor in 1997, when I was 24. Eternally grateful to Dame Prof Carol Black, Prof Chris Denton, Dr Kevin Howell and team Royal Free London NHS Foundation Trust.

It is a full time job managing my symptoms and resultant disability. My hobby is banging the drum, highlighting the importance of medical research, when living with a life changing, rare disease, which has no cure 🥳

I am honoured to be the Royal Free Charity Ambassador for scleroderma, as well as a Royal Free visionary and delighted to feature in the legacy leaflet.

https://royalfreecharity.org/giftsinwills/

I am a patient voice on the patient public and inclusion group at the clinical research facility at the Royal Free hospital. .

As well as, I am a patient research champion with the National Institute of Health Research (NIHR).

I have served the maximum time allowed (6 years) on the NHS England clinical reference group (CRG) for MSK, as well as, the CRG for dermatology.

I am a patient advocate with the European Medicines Agency, sitting on the Scientific Advice Working Party (SAWP) and Committee of Orphan Medicinal Products (COMP) as well as being a patient information leaflet reviewer. I am also a patient advocate with Eurordis, European Rare Disease organisation.

Over the decades, I have been featured in numerous media portals, including TV, radio and international newspapers.

This year, I was delighted that Rare Disease UK published my poem 'More than you can imagine' into a poster format for the four nations parliamentary receptions for Rare Disease Day.

https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception

Raynauds Scleroderma Awareness- Global Patients

blog.raynaudsscleroderma.co.uk

June 🌻

We NEED a cure and understanding of the cause to systemic sclerosis (scleroderma), NOW 🙏

2025 : celebrating 30 years of the Scleroderma Unit Royal Free Hospital Royal Free London NHS Foundation Trust.

https://youtu.be/guWYZ9E1G5A?si=H3WFrhKnutDiGBIM

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. If you would like to take part in any of the scleroderma studies or would like some additional information, please contact the clinical team:

Email: rf-tr.rheumclinicaltrials@nhs.net

My experience of taking part in clinical trials:

https://blog.raynaudsscleroderma.co.uk/2017/04/taking-part-in-raynauds-scleroderma.html

https://blog.raynaudsscleroderma.co.uk/2018/09/medical-research-get-involved-take-part.html

https://royalfreecharity.org/how-we-help/research

Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital. Your donation will be used for medical research purposes only. Thank You 🙏

There are several ways as to how you can donate:

Via the Royal Free Charity :

Donation Page : https://royalfreecharity.org/donate

Choose your amount, then click, donate now.

Step 1, click on the box next to

'I'd like to donate to a specific appeal or fund'

Scroll down the menu until Scleroderma and Raynaud's option (last option in list). Click on this option.

OR

Leave a gift in your Will :

https://royalfreecharity.org/giftsinwills/

The Royal Free Charity provides a free Will writing service ☝️

OR

Just Giving Page :

https://www.justgiving.com/fundraising/sclerodermaunit-royalfree

Thank You 🙏

Social Media:

YouTube

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