Name : Hazel Attua
Email : h.attua@outlook.com
Role : Haematology Co-ordinating Centre Sickle Cell Representative
Hazel is a dedicated HCC Sickle Cell Representative, passionate about making a positive impact in the lives of individuals and families affected by sickle cell. She works tirelessly to raise awareness about the condition through public speaking engagements, educational campaigns, and community outreach. By collaborating with healthcare providers, organizations, and policymakers, she aims to ensure that the needs and rights of individuals with sickle cell are recognized and addressed.
Name : Saima
Email: saima_@hotmail.com
Job Role: Haematology Co-ordinating Centre Thalassemia Representative
Saima’s journey in this role has been driven by a deep commitment to improving the lives of individuals and families affected by thalassaemia. Her mission is to ensure that those affected by this condition receive the support and resources they need. Thalassaemia is a complex genetic disorder that requires a collaborative approach to treatment and management, and she is dedicated to being a voice for those who need it most.
Name: Oleander Agbetu
Role: Solace Board Member & Community Advocate
Oleander is the Parent/Carer Board Member of the Solace Support Group and a dedicated community advocate. Her passion lies in building relationships within communities and ensuring that individuals and families receive the support they need to thrive. Oleander collaborates with an incredible team to address the challenges faced by our community and to champion programs that make a tangible difference in people’s lives.
Name: Jayson Kupoluyi
Role: Sickle Cell Advocate & Adviser
Jayson’s role as a Sickle Cell Advocate & Adviser is to advocate for sickle cell patients, assist them in developing skills to have better conversations with healthcare professionals and educate others, such as teachers and employers.
He is also committed to teaching them about self-care, developing coping mechanisms, eating healthy and helping others with sickle to navigate difficult times.
Solace is a Homerton & Royal London Sickle Cell and Thalassemia support group that meets on the 3rd Tuesday of month. However, we have members from all over London.
Our Support Group provides a compassionate, supportive, and an empowering community for individuals and families affected by Sickle Cell & Thalassemia. We aim to enhance the quality of life through mutual support, education, advocacy, and shared experiences.
Who We Are:
We are a diverse and inclusive group of individuals who come together to share our journeys, challenges, and triumphs associated with sickle cell. Our members include patients, family members, caregivers, and advocates who understand the unique experiences and needs of living with this condition.
Next Dates:
17th September 2024
15th October 2024
19th November 2024
17th December 2024
Links and literature created for members:
- UKTS website : https://ukts.org/
- Revised standards: https://ukts.org/3d-flip-book/standards-for-the-clinical-care-of-children-and-adults-living-with-thalassaemia-in-the-uk-4th-edition-2023/
- Social media pages : Facebook; Instagram; X ; YOUTUBE
- Resources: https://ukts.org/information/
- Fact Sheet
Links and literature created for members:
- UKTS website : https://ukts.org/
- Revised standards: https://ukts.org/3d-flip-book/standards-for-the-clinical-care-of-children-and-adults-living-with-thalassaemia-in-the-uk-4th-edition-2023/
- Social media pages : Facebook; Instagram; X ; YOUTUBE
- Resources: https://ukts.org/information/
- Fact Sheets (new) : https://ukts.org/wp-content/uploads/2021/02/all-fact-sheets.pdf
- Membership forms: https://ukts.org/membership/