Our charities recently worked together to run the first ever national survey of people affected by rare bone marrow related conditions, and produced a national report.
Here are some of the recommendations we’re making to improve the experience of being diagnosed and living with these conditions, or caring for someone who is.
Should be part of the care plan for every bone marrow condition patient
All these rare conditions should have access to specialised services to foster equal access to
Improved access for patients and the people who care for them to
Including clinical trials, and the latest treatments.
which takes into account the complexities of rare conditions, and provides people with rare conditions with the same support you’d expect if you received a cancer diagnosis
A holistic, whole-person approach to care which
patients face as a result of being diagnosed with a rare condition.
From the feeling of isolation on an oncology ward, to the practical cost of travelling long distances to multiple appointments with different specialists on different days.
Particularly among medical professionals of these rare conditions and the impact they have on a patient’s day-to-day life.
Increased collaboration with and
So we can keep building and improving on our services, and reach more people earlier with essential peer-to-peer support.
The Rare Voices report was funded thanks to sponsorship from Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi, and the survey was funded by sponsorship from Alexion AstraZeneca Rare Disease, Roche and Sobi. The survey development was supported by Absolute Market Research and M+F Health, and the report development was supported by M+F Health.
Alexion AstraZeneca Rare Disease, Pfizer, Roche and Sobi had no editorial control over the content of the report.