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 firstname.lastname@example.org
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.
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.
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: