Together for Healthy Marrow Alliance Update

The Together for Healthy Marrow Alliance brings together six small but mighty charities that support people living with rare conditions that include bone marrow failure as a symptom. The conditions include Aplastic Anaemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemaglobinuria, Shwachman Diamond Syndrome, Fanconi Anaemia and a range of Congenital Anaemias.

As the Alliance we undertook a survey of our respective communities to improve our understanding of patient journeys and lived experience and to identify key concerns for our community and gaps in support.

In parallel with this our Alliance also won a six-figure National Lottery grant for our Better Together for Healthy Bone Marrow Project, which is now more than half-way through its 3 year programme, which aims to solve problems both for individuals living with bone marrow-failure related conditions and for our small support charities in the Alliance to ensure that they not only survive but thrive in the long term.

This has been directly benefitting our FA community by providing emotional wellbeing support, in the form of webinars, courses and one-to one support. We have also been providing webinar and one-to-one support on financial benefits and webinars on travel insurance.

For Emotional Wellbeing and Fundraising Support, our 6 charities have been working under the banner of ‘Super Rare’ and you can find out more about the Emotional Wellbeing and Financial Benefits Support here: https://super-rare.org/get-support/.

Join our Facebook Fanconi Hope Family Support Group to get regular updates on courses available.

From a charity perspective, the project team, which sits within the Aplastic Anaemia Trust, has, amongst other things, helped us find admin, website and fundraising support. Some of you may have already been in contact with Suzanne who acts as a personal assistant to the Chairman, taking a significant amount of the day-to-day load off him. The project team have also been helping to identify ways to help our charity grow and at the same time make it more resilient and less vulnerable to individuals’ contributions.

Through the project a Community Reference Group has also been set up to hear directly from our respective communities, and we are very grateful to Stacy Perry, an FA parent, and Shabraz Akram, “Shabz” for taking on these roles so enthusiastically.

Article posted on

Share this post

Scroll to Top

Sign-up for Updates

Join our mailing list and we’ll keep you updated with our work, special events and ways in which you can make a difference. Your email will not be shared.