TRCN HCC Bi-Annual Business Meeting
TRCN HCC Sickle Cell Disorder Multi-disciplinary Team Meeting
TRCN HCC Thalassaemia and Rare Inherited Anaemias Multi-disciplinary Team Meeting
TRCN HCC Adult Sickle Cell Disorder Sub-Committee / Morbidity and Mortality Meeting
TRCN HCC Paediatric Sub-Committee Meeting
TRCN HCC Paediatric Morbidity and Mortality Meeting
Paediatric Sickle Cell Priapism Pathway
UCLH provides the regional andrology service for management of priapism. This service is now being extended to children and young people with sickle cell disorders from across the Red Cell Network.
Referrals should be made to the urology registrar via UCLH switchboard, if asked this would be the UCLH Tower urology registrar.
TRCN recently held a meeting regarding the MedTech Funding Mandate. This collaborative project is a great opportunity to access some additional funding to improve apheresis provision and services.
Below are the video recordings from the meeting.
If you have any queries about the discussions, please contact us at uclh.
MedTech Funding Mandate - Haem Funding Opportunity- Maxine Farmer Presentation.mp4 (MTFM explained – 5mins).
MedTech Funding Mandate - Haem Funding Opportunity - Dr Martin Besser presetation.mp4 (Patient Apheresis Collaborative Pathway Development – 24mins)
MedTech Funding Mandate - Haem Funding Opportunity- Q&A Session.mp4 (Q&A including Funding Mythbusting – 30mins).
The Red Cell Network held its first HCC Business Meeting in February 2023, to which all SHTs and LHTs within the Network were invited to attend.
The HCC Business Meetings are an opportunity for colleagues from across our Sickle Cell and Thalassaemia / RIA networks to see the work that is being done by the HCC, as well a chance to network and build collaborative working relationships across regions.
Topics of discussion included the educational sessions/programmes provided by the HCC and how to access them, updates on standardisation of clinical guidelines, and guidance for the Peer Review Process which commences in Autumn 2023.
You can view the full recordings of the meetings, please click on the following links
TRCN HCC Business Meeting February 2023
TRCN HCC Business Meeting July 2023
This talk was organised by the West London Haemoglobinopathy Coordinating Centre (HCC) in collaboration with Imperial College London and Sickle CHARTA.
To view the recording, please visit this link: Gene Therapy for SCD in Africa and the activities by the Global Gene Therapy Initiative
Speaker: Prof. Jennifer E. Adair
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Opening Remarks |
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Gene Therapy for Sickle Cell Disease in Africa and the activities by the Global Gene Therapy Initiative |
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Remarks from National Haemoglobinopathy Panel |
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Remarks from Genomics England |
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Discussion |
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Closing Remarks |
A new NHS England campaign aims to raise awareness of prescription saving schemes.
A Prescription Prepayment Certificate will save people money if they pay for more than three items in three months, or 11 items in 12 months. The certificate covers all NHS prescriptions for a set pre-paid price, which can also be spread over 10 direct debit payments.
People on a low income could be entitled to help with costs or even free prescriptions through the low income scheme, depending on their circumstances.
The campaign is specifically targeting those living with long-term conditions as well as people living in deprived areas as data shows these populations receive significantly more prescription items than those living in less deprived areas.
For more information on Prescription Prepayment Certificates visit: www.
Low income scheme eligibility checker: www.
Referrals can be made to the Sickle Cell Children and Young Person’s Peer Mentoring programme. Further information about the programme can be found here https://
To make a referral, please use the following link: https://forms.office.com/e/5HwexD7cuv
If you wish to get in contact with one of the mentors please use the contact details below.
addassa.follett@sicklecellsociety.org (Lead Mentor contact)
mentors@sicklecellsociety.org (General Mentor email contact)
This publication is a joint effort by the United Kingdom Thalassemia Society and the UK Forum for Haemoglobin Disorders.
Clinical disclaimer
Whilst the information presented in this document is based on available evidence and the knowledge and perspectives of its authors, including the UK Thalassemia Society and the UK Forum on Haemoglobin Disorders, it is important to note that they cannot be held liable for any clinical issues that may arise in individual patients who are treated according to the content of this document.