Events Archives » Sickle Cell Society

Appropriateness in Access to Automated Red Blood Cell Exchange. Discussion forum for patients and clinicians to help improve access to care.

Matthew — Thu, 06 Apr 2023 17:22:16 +0000

The Sickle Cell Society and the Haemoglobinopathy Coordination Centres (HCC’s) have recently distributed a survey to sickle cell patients to ask for views on the provision of Automated Red Blood Cell Exchange, whether it is acceptable and whether it was available to those patients requiring treatment. Now the questionnaires have been completed and analysed, we would like to invite you to take part in a webinar, where we will discuss the findings of the survey.

I. Sickle cell society members
II. Key contacts within NHSE
III. Key contacts within HCC Network
IV. AHSN Spectra Optia Leads
V. Spectra Optia National Working Group Members (NHS BT clinical leads and Terumo)

We will facilitate a lot of discussions around key topic areas such as:

• Informed decision making and talking to clinicians
• Out of hours care for Sickle Cell
• Travel and transport arrangements
• Barriers in attending treatment: pain, fatigue and the waiting
• Pain relief: the wait, under prescribing and overdose

Please feel free to sign up and to take part in these important discussions which will help inform the provision of services.

Seminar details:
20th April 2023
Time 10-12pm
Webinar link: https://www.eventbrite.co.uk/e/sickle-cell-disease-appropriateness-in-access-to-automated-red-blood-cell-tickets-608610810317

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Announcing our 2023 Children’s Holiday

Matthew — Tue, 28 Mar 2023 21:00:04 +0000

Every year for as long as we can remember, we’ve run a Children’s Holiday for young people with Sickle Cell. For three years over the pandemic, we ran these holidays virtually.

During this, we saw the immense value in including parents and siblings in the experience, so for 2023, our Sickle Cell Family Retreat was born!

From 11th-13th August 2023, a group of families with at least one child aged 6-15 with Sickle Cell will come together at the Pioneer Centre in Shropshire for our Sickle Cell Family Retreat: a free holistic weekend full of education, adventures, learning and fun. We would love for you to join us!

A team of enthusiastic volunteers and experienced staff members will support the holiday. All families will embark on a programme, which includes: educational seminars, adventure activities (such as climbing, zip wire and archery), peer-to-peer support, relaxation-based activities (such as yoga and meditation) and, of course, a Saturday evening disco and Friday night stories around the campfire!

This will be delivered in a medically safe environment specifically designed with children with Sickle Cell in mind.

Would you like to come? If so, please fill in the application form below to apply for a place for your family. We will likely be oversubscribed, so please apply as soon as possible.

https://bit.ly/scs-retreat-application

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Mentor Programme Relaunch

Matthew — Sat, 08 Oct 2022 20:27:33 +0000

Do you know or live with anyone between the ages of 10-24 who have Sickle Cell in East London? The Sickle Cell Society are excited to be relaunching our Mentor Programme in East London and we would love for you to join us via MS Teams for the launch. Sign up here

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Virtual Children’s Holiday 2022

Matthew — Wed, 22 Jun 2022 09:56:27 +0000

This year we’re excited to be running our popular online “Virtual” Holiday again for kids and teens with Sickle Cell and their families holiday.

Running from Friday 5th August to Sunday 7th August, we are inviting around 50 families to take part in a weekend of fun online activities, bringing you the opportunity to learn more about Sickle Cell, make new friends, and connect with other families who have a child, or children with Sickle Cell, all from the comfort of your living room!

The virtual break will bring fun activities, new friends and lots of sickle cell learning straight to your front room! Last year families who attended told us…

“Thank You for this amazing weekend! What a feat pulling this off online so very successfully! Our family had an amazing time and it was valuable in so many ways that I don’t even know where to begin! All I can say is thank you!”

Activities will be designed to be ‘just right’ for each age group, including education about living with sickle cell and lots of activities to boost wellbeing across the board. Our virtual camp will be hosted via zoom.

Siblings will be more than welcome during the vast majority of activities – we know that they are impacted by their siblings sickle cell too. There will also be ‘parent/carer’ sessions without the children, and a session specially for siblings to learn about sickle cell and get answers to any questions that they have.

We may be able to offer support to families without internet access who would like to take part.

So what are you waiting for? Sign up to reserve your space here!: http://bit.ly/scs-holiday-2022

This program is supported via a grant from Global Blood Therapeutics, Inc.

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Stem Cell Transplant: My New Journey

Matthew — Thu, 24 Mar 2022 15:26:46 +0000

Join us on Monday 28th March at 6:30pm for ‘Stem Cell Transplant: My New Journey’ with Ronke Dosumu

We can’t wait to catch up with Ronke Dosumu to hear all about her journey with sickle cell and first-hand experience of having a Stem Cell Transplant.

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My Baby Has Sickle Cell: Online Event

Matthew — Thu, 17 Mar 2022 14:58:46 +0000

Join us on Wednesday 23^rd March at 6:30pm for our online event “My Baby Has Sickle Cell” where we will hear from Hayley King and Clementina Elba around navigating parenthood with a child with sickle cell and the life-changing impact of blood exchange.

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Give Blood: A Chat with Heroes

Matthew — Tue, 15 Mar 2022 16:50:30 +0000

Do you want to help save lives but still feel undecided about giving blood? This one is for you…

Join us this Thursday 17th March at 6:30pm for our online event ‘Give Blood: A Chat with Heroes’.

We will hear from blood donors Brenda Smith and Emmanuel Nola who will be sharing their first hand experiences as life-saving donors.

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Family Wellbeing Workshop

Matthew — Tue, 15 Mar 2022 11:19:27 +0000

Do you or anyone you live with have sickle cell? Join us for a Family Wellbeing Workshop – for Parents & Children

Saturday 26th March

12-2pm
via Zoom

Join us for:

Ways to manage your wellbeing
Activities
Benefits
Q&A
Dietary and nutrition

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Easter Arts & Crafts

Matthew — Wed, 09 Mar 2022 16:39:54 +0000

Do you or anyone you live with have sickle cell?

Join us for an Easter Themed Arts & Crafts workshop

Tuesday 12th April
10-11:30am
Ages 4-11 years
via Zoom

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Sickle Cell: What’s the Latest?

Matthew — Tue, 08 Mar 2022 17:26:10 +0000

Join us on Thursday 10th March at 6:30pm for a live Q&A session with Clinical Research PHD Fellow and Haemotology Registrar, Norris Igbineweka as we discuss sickle cell, new treatments and cures, blood donation and the importance of ethnically matched blood in black-heritage communities.

This session will be hosted by our lovely Volunteer, Jackie Campbell.

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