Scleroderma Unit Royal Free Hospital

20/11/2025

Nicola Whitehill, who lives with the debilitating autoimmune condition scleroderma, talks about how research has helped her live her life.

11/11/2025

Help shape rare disease policy in England

The RareCare project, a national study funded by the NIHR, has launched a survey to better understand the real-life experiences of people affected by rare conditions and to assess whether England’s Rare Disease Action Plans are leading to improvements in the four priority areas:
- faster diagnosis, coordination of care
- access to treatment and support
- awareness and education among healthcare professionals

If you are living with a rare disease in England, caring for someone who is, or working in the rare disease field, they want to hear from you. Scan the QR code or access via https://form.jotform.com/252324831142044

01/10/2025

October
Read about the Raynaud's Unit, Royal Free Hospital:
https://raynaudsrf.blogspot.com/2019/10/the-raynauds-unit-royal-free-nhs.html
Raynaud's Awareness:
https://raynaudsrf.blogspot.com/2020/03/raynauds-awareness-month-october-2018.html

Make a donation here:
https://www.justgiving.com/fundraising/raynaudsunit-royalfree
Follow Twitter, Facebook, Instagram and YouTube

29/09/2025

Sclerodema research Royal Free London NHS Foundation Trust :

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

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 🙏

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 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

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

20/09/2025

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

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

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