Scleroderma Unit Royal Free Hospital

10/11/2026

is currently taking place in Orlando. Here is one of the posters presented by Prof Chris Denton Royal Free London NHS Foundation Trust Scleroderma Unit Royal Free Hospital :
A prospective randomised trial found that stem cell-enriched autologous lipotransfer significantly improved MHISS in patients with orofacial fibrosis at 6 months. A potential therapeutic approach, with further research needed to understand its mechanisms and long-term benefits
I'm not brave enough to have tried this !

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

Medical research provides . Hope that an improvement in treatments will become available, as well as, ultimately, a cure will be found.

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 ☝️I'm delighted to be included as a Royal Free visionary ☝️

OR

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

Thank You 🙏

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

blog.raynaudsscleroderma.co.uk

I'm delighted that my awareness blog has reached over 1.2 million views ☝️

Follow on Social Media and YouTube:

12/10/2026

RIP Anne Mawdsley 31.5.42 – 12.10.14. World Arthritis Day, Raynaud’s Awareness Month, October 2018. Scleroderma...

30/09/2026

Autumn always provokes some nostalgic thoughts to when I was diagnosed with scleroderma, autumn 1997, and given a 15 month prognosis by my diagnosing doctor 😱

The following year, 1998 I changed my medical care to the superhumans Dame Prof Carol Black and Prof Chris Denton Royal Free London NHS Foundation Trust , and to whom, I am eternally grateful 🙏 😇

https://blog.raynaudsscleroderma.co.uk/2025/02/more-than-you-can-imagine-rarediseaseday.html?m=1

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

Medical research provides . Hope that a cure and improved understanding of the disease will be discovered along with better treatments.

There are currently 13 ongoing research trials for scleroderma at the Scleroderma Unit Royal Free Hospital. National Institute for Health and Care Excellence. NIHR - Health and Care Research

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: [email protected]

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 Royal Free London NHS Foundation Trust. 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 ☝️I'm honoured to be included as a Royal Free Visionary.

OR

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

Thank You 🙏

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

blog.raynaudsscleroderma.co.uk

Absolutely delighted that my awareness blog ☝️ has reached over 1.2 million views.

Follow Instagram / Facebook / X / YouTube:

Help Nikki Whitehill raise money to support Royal Free Charity

12/08/2026

Get Involved! University of Exeter researchers want to know about the costs of living with a rare disease in the UK.

Rare diseases can have a huge financial impact on people and their families, from lost income to extra costs like home adaptations and travel for specialist care.

Better understanding of these costs will help decision-makers recognise the full value of investing in effective treatments. To find out more and to get involved please e-mail Kate Boddy directly at [email protected].

29/06/2026

Delighted to be included here for # 2026! And I'm over the moon that my awareness blog has reached over a million views now 😊
Happy 29th June 🌻
June

Why 29th 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 the presentations 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' :

https://blog.raynaudsscleroderma.co.uk/2025/02/more-than-you-can-imagine-rarediseaseday.html

2026 : celebrating 31 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

Research offers . Hope that improved treatments, better understanding and ultimately, a cure will be found National Institute for Health and Care Research NIHR Research Delivery Network

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

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: Instagram / Facebook / X / YouTube, Follow

Diagnosed at 24 with aggressive diffuse systemic sclerosis and given 15 months to live, Nicola Whitehill has spent nearly three decades proving that research changes lives.

This World Scleroderma Day - which has the theme of research and advocacy - we're sharing her story.

Scleroderma is a rare autoimmune condition that causes hardening of the skin and serious damage to internal organs, muscles and blood vessels. The Royal Free Hospital is home to one of the world's leading scleroderma research and treatment programmes, caring for more than 1,400 patients.

Nicola has championed that research every step of the way and her blog has now been read nearly one million times.

Read her full story and visit her blog in the comments below.

26/06/2026

💖😇

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

2026 : celebrating 31 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

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

Medical research provides . Hope that the cure and the cause of scleroderma will be discovered, along with better treatments 🙏

There are currently 13 ongoing research trials for scleroderma at the Royal Free hospital. National Institute for Health and Care Research NIHR Research Delivery Network. 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: [email protected]

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 🙏

'Living with a rare disease without a cure, is most character building, that's for sure ' :
blog.raynaudsscleroderma.co.uk

Social Media, follow on Instagram / Facebook / X / YouTube:

12/06/2026

Today I have made it to 53 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

The top photo in this collage was taken at the recent annual family day Scleroderma Unit Royal Free Hospital. The bottom photo was taken when I had the pleasure of sharing the stage with Prof Denton, last autumn, for the biotechnology company, Relation, team building day, which was held on the CuttySark-Greenwich. What a day out that was, followed by weeks in recovery 😱

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 for Health and Care Research NIHR Research Delivery Network.

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-Rare Diseases Europe.

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

Last year, I was delighted that Rare Disease UK Genetic Alliance 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

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

https://blog.raynaudsscleroderma.co.uk/2025/02/more-than-you-can-imagine-rarediseaseday.html

June 🌻

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

Medical research provides HOPE. Hope that the cure, better understanding and improved treatments will become available soon.

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 🙏

Follow Instagram / Facebook / X / YouTube:

31/05/2026

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

2026: celebrating 31 years of the Scleroderma Unit Royal Free Hospital. Eternal gratitude to Dame Prof Carol Black, Prof Chris Denton, Prof Oong, Dr Kevin Howell and team.

Medical research provides hope. Hope that the cure, better treatments and better understanding of the cause of scleroderma will be discovered. NIHR Research Delivery Network

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

Email: [email protected].

Tel: 020 7317 7544.

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 ☝️

Thank You 🙏

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

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

30/05/2026

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

2026: celebrating 31 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.

Medical research provides hope. Hope that the cure, better treatments and better understanding of the cause of scleroderma will be discovered.

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 trial team:

Email: [email protected].

Tel: 020 7317 7544.

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 ☝️

Thank You 🙏

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

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

15/05/2026