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Category Archives: News
“Waiting for the blood to arrive”
CAN (Congenital Anaemia Network) asked Alice Soboleva, a year 10 student, to interview Sabrena, a year 7 student with Thalassaemia about “What is it like to have a blood transfusion?” Read what she wrote here.
New hope for pain relief in sickle cell disease
Read the first in a series of articles for the CAN community looking at problems faced by people with congenital anaemias and how research is improving understanding and treatment.
We look at trials of a new drug called Crizanlizumab which offers hope for relief from the excruciating pain of sickle cell crises.
Pain is a huge issue in the management of sickle cell disease and there have been no new drugs for 30 years. Finally, this research offers an exciting prospect that help may be available in the not-too-distant future.
Last chance to have your say!
The James Lind Alliance Priority Setting Partnership survey is closing in 48h. This is your chance as someone affected by, caring for or working with people with rare inherited anaemias to give your opinion on what are the most important questions that remain unanswered for those disorders.
Please have a look at the survey, you have 48h left to answer it:
Essay Prize
CAN is sponsoring an essay prize for students. See http://togetherwecan.uk/essay for more details and how to apply.
Rachel’s Story
In these videos, Rachel talks about her condition, how it affects her life and why contributing your questions is so important.
As Rachel would say, go ahead, get involved! Click this link to take part in the Survey:
https://www.surveymonkey.co.uk/r/LC8393G
You can also get updates on the results of the survey here.