Leah Rosengarten is an Assistant Professor of Children’s Nursing at Northumbria and formerly a Children and Young People’s Cancer Nurse. She is also a Trustee of Children’s Cancer North, a charity focused on improving lives for Children and Young People with Cancer. September is Childhood Cancer Awareness Month, an internationally recognised month focusing on raising … Read more September is Childhood Cancer Awareness Month

Beacon: for rare diseases is a UK-based charity that’s building a united rare disease community with patient groups at its heart. This year marks a decade of operation for the charity after being established as Findacure in 2012. To better reflect the charity’s values and mission, Findacure was rebranded as Beacon: for rare diseases in … Read more Beacon is empowering rare disease patient groups to harness their power and potential

As we conclude this blog series, let’s reflect on the key points covered throughout the previous blogs and unite in a call to action to raise awareness about sickle cell disease. The series of four insightful blogs successfully raised awareness about the often-overlooked Sickle Cell Disease (SCD). These blogs covered important topics including genetic inheritance, … Read more Blog 5: Summary of Series and Call to Action to Raise Awareness by Debbie Omodele

Kamaljit is a Nurse Consultant in Gestational Trophoblastic Disease, an incredibly rare disease which has a profound impact on many women and their families. She has written this blog to raise awareness. Kamaljit was recently nominated for the ‘Compassion Award’ by The Mariposa Trust. The trust is a leading support charity primarily working within the … Read more Rare disease: Gestational Trophoblastic Disease. Kamaljit Singh

Despite existing for many decades, sickle cell disease (SCD) still faces a knowledge gap among the public and healthcare professionals (HCPs). Educating HCPs about SCD pathophysiology, care, and management is crucial to bridge this gap and breaking down healthcare-related stigmas. In this blog, we will hear directly from patients, shedding light on their experiences and … Read more Blog 4: Closing the Education Gap: Promoting Compassionate Care for Individuals with Sickle Cell Disease by Debbie Omodele, Children’s Haemoglobinopathy Nurse Specialist, Barking, Havering and Redbridge University Hospital Trust.

Blog 3: Sickle Cell Crisis by Debbie Omodele What words come to mind when you hear the words ‘sickle cell’? I can almost guarantee that many of you thought of the word pain amongst many. Pain is one of the most common complications of Sickle Cell Disorder (SCD).  As mentioned in blog 1 and 2, … Read more Blog 3: Sickle cell crisis. Third in the series of blogs by Debbie Omodele, Children’s Haemoglobinopathy Nurse Specialist, Barking, Havering and Redbridge University Hospital Trust.

Genotypes Did you know that a couple who are both carriers of the sickle haemoglobin (Hb) gene (HbAS) carry a 25% chance of having a baby with Sickle Cell Disorder (SCD)? These chances are the same with every pregnancy they have together. Your genotype is the set of genes that determines whether you have SCD, … Read more Blog 2: Genotypes, Compatibility and Sickle cell disorder. Debbie Omodele

This is the first of  a series of Blogs written by Debbie Omodele, Children’s Haemoglobinopathy Nurse Specialist, Barking, Havering and Redbridge University Hospital NHS Trust. Keep an eye out for follow ups on topics such as preconceptual screening, managing conditions, psychological well-being, pain management and transition looking at the importnace of family wihtin this process. Enjoy. … Read more Blog 1: Shining the light on Sickle Cell on Rare Disease Day