This is a great short video where you can hear Chris talk about Sickle Cell Disease. Let’s all talk about it:
What a wonderful way to start the summer! 120 patients, families, friends, carers, all got together in Oxford to share food, new experiences (yoga!), facepainting, tennis, crafts, a small petting zoo and lots of meeting with old and new friends.
Under the beaming sunshine, we were exchanged stories, supported each other, and enthused everyone to keep working to help patients with inherited anaemias.
We had patients with sickle cell disease, hereditary spherocytosis, Diamond-Blackfan anaemia, Congenital Dyserythropoietic anaemia, amongst others.
Want to join us next year? Just let us know at email@example.com
With lots of love from
The CAN Team
CAN was pleased to support the James Lind Alliance in their Priority Setting Partnership. People with rare inherited anaemias, their carers, and health professionals all worked together to identify the most important areas for future research.
You can read the full report here: Rare Inherited Anaemias PSP_FINAL REPORT
We have produced a leaflet about Hereditary Spherocytosis, which we hope you will find useful.
Our annual family day is on Sunday 13th May, at 11:30am. For more information please mail firstname.lastname@example.org!
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.
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.
Please have a look at the survey, you have 48h left to answer it:
CAN is sponsoring an essay prize for students. See http://togetherwecan.uk/essay for more details and how to apply.
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:
You can also get updates on the results of the survey here.