Raynauds Unit Royal Free Hospital

Raynauds Unit Royal Free Hospital Raynaud's patients are desperate for a cure and improved treatments, with many unmet clinical needs Raynaud's is caused by involuntary vasospasm.

It is extremely painful and debilitating. There is currently no cure with a desperate need for improved treatments and understanding. This page will provide up to date information about medical research into Raynaud's at the Raynaud's Unit, The Royal Free Hospital, London, led by world expert leaders, Dr Kevin Howell and Prof Chris Denton. https://www.justgiving.com/fundraising/raynaudsunit-royalf

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Fundraising for medical research to provide a cure for Raynaud's.



https://www.royalfree.nhs.uk/services/services-a-z/scleroderma/research/

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). I, Nicola Whitehill, run this fb page, in the hope that it will be a vibrant community with much patient participation by way of sharing experiences of Raynaud's and RURF (Raynaud's Unit Royal Free) ~ living the dream, hoping for a cure

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

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

10/06/2025

June 🌻

This infographic highlights the management of Raynaud's phenomenon. Prevention is better than cure. There is no cure πŸ₯Ά

https://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html

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

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 πŸ™

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 πŸ™

blog.raynaudsscleroderma.co.uk

Social Media:

YouTube

07/06/2025

June 🌻

This infographic highlights Raynaud's phenomenon.

https://blog.raynaudsscleroderma.co.uk/2018/10/raynauds-scleroderma-50-shades-of-blue.html

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

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 πŸ™

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 πŸ™

blog.raynaudsscleroderma.co.uk

Social Media:



YouTube

28/02/2025

Nicola Whitehill, our volunteer ambassador, has written a poem which has been showcased at Genetic Alliance UK's parliamentary reception to mark Rare Disease Day about her experience with scleroderma.

Patients with the rare autoimmune disease scleroderma have access to a world-renowned centre of excellence scleroderma unit at the Royal Free Hospital, part of the Royal Free London NHS Foundation Trust, which is celebrating its 30th anniversary this year. It is the largest of its kind in the UK and the department even boasts a clinical trials unit for cutting edge experimental treatments.

The unit will host a family day on 17 May between 10am and 4pm at the Royal Free Hospital atrium.

πŸ‘‰ Read more: https://royalfreecharity.org/stories/volunteer-ambassador-showcases-scleroderma-poem-at-parliamentary-reception


Raynauds Scleroderma Awareness- Global Patients

Delighted to have my poem, 'Living with a rare disease without a cure is far more life changing, than you can imagine' i...
28/02/2025

Delighted to have my poem, 'Living with a rare disease without a cure is far more life changing, than you can imagine' included in the anthology πŸ₯³
https://blog.raynaudsscleroderma.co.uk/2025/02/more-than-you-can-imagine-rarediseaseday.html

TODAY IS RARE DISEASE DAY! πŸ¦“ πŸ₯³

To mark Rare Disease Day 2025, we are proud to present 'More than you can imagine: an anthology of rare experiences' - a powerful collection of creative works that bring to life the experiences of individuals within the genetic, rare, and undiagnosed communities through poetry, personal stories, photography, and artwork.
πŸ‘‰ https://ow.ly/PyFz50V7I4Q

And 'More than you can imagine: Opportunities for improving the lives of people living with rare conditions' - Genetic Alliance UK’s Rare Disease Day policy report that reflects on the impact of the UK Rare Disease Framework and highlights the significant unmet need that continues to exist in the rare condition community.
πŸ‘‰ https://ow.ly/VJ6x50V8ir2

You can view both anthology and report NOW.

If you'd like to support future work like these publications then please consider donating today. Every donation goes towards helping us continue our vital work to support the 3.5 million people living with a rare condition in the UK.

03/01/2025

Abstract. This guideline was developed according to the British Society for Rheumatology Guidelines Protocol by a Guideline Development Group comprising he

31/12/2024

Wishing you a very happy 2025 πŸ’– The Scleroderma Unit Royal Free Hospital Royal Free London NHS Foundation Trust will be celebrating it's 30 year anniversary in May 2025 - eternal Thanks to Prof Chris Denton and team πŸ˜‡β­
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 Royal Free London NHS Foundation Trust. Your donation will be used for medical research purposes only. Thank You πŸ™
There are several ways as to how you can donate:
Via the Royal Free Charity:
Donation Page : https://royalfreecharity.org/donate
Scroll down to tick box 'your donation will be used where the need is greatest. However please tick this box if you would like to donate to a specific appeal or fund'. Click on the box to reveal 'a where would you like to give to' drop down menu. Scroll down to the Scleroderma and Raynaud's research option and click on this option.
Leave a gift in your Will : https://royalfreecharity.org/giftsinwills/
The Royal Free Charity provides a free Will writing service ☝️
Just Giving Page : https://www.justgiving.com/fundraising/sclerodermaunit-royalfree
Thank You πŸ™

29/12/2024

Do you suffer from Raynaud's? This winter, have a listen to our new podcast, Raynaud's the mind-body connection. Lots of tips included, so we hope it helps. Find all our podcasts on the BIRD podcast page on our website or via your usual listening platform.

10/10/2024

October is Raynaud's Awareness Month! Let's spread awareness and support those living with this condition. Early intervention is key to managing symptoms and improving quality of life. Join us in posting on social media, hosting events, and sharing the Raynaud's Awareness Month graphic. Together, we can make a difference! ❄️ https://prn.to/4gFBRdB

23/04/2024

Acupressure Is Not Effective For The Treatment Of Raynaud’s Phenomenon. Journal of Scleroderma and Related Disorders, Volume 2....

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