PNH Support joins Alliance with UK Bone Marrow Failure Patient Organisations
April 14, 2019
A group of rare disease charities specialising in acquired and inherited rare bone marrow failures have come together to form a collaborative alliance – Together for Heathy Marrow. The charities include Fanconi Hope, DC Action, PNH Support, DBA UK and the Aplastic Anaemia Trust.
The alliance has been initiated in recognition that the operating environment is becoming increasingly complex and challenging, especially for small charities. Whilst the number of families affected by the rare illnesses, such as aplastic anaemia, dyskeratosis congenita, paroxysmal nocturnal haemoglobinuria (PNH), fanconi anaemia, diamond blackfan anaemia and others is relatively small, the challenges they face are shared and are significant. They include a lack of access to consistent high-quality care pathways, limited awareness of their rare condition outside of the immediate support network and major treatment centres, and a need for greater patient advocacy to influence easier access to vital treatments, to name but a few.
“The Alliance will provide us with a unique collaborative platform for sharing learning, planning and delivering joined solutions to shared problems, representing our community of patients in external networks, including internationally, and projecting our collective voice in the broader rare disease network, such as Genetic Alliance UK”, said Grazina Berry, AAT’s CEO.