Raising awareness

Journey of Hope: Ceridwen Hughes at RAREfest20

Journey of Hope: Ceridwen Hughes at RAREfest20

“The importance of diagnosis cannot be underestimated. Not only do you feel like you have something you can put a name to, but it opens doors, not least the ability to connect with others who have that shared experience and knowledge.”– Ceridwen Hughes, Same but...

New Scientist magazine: Rare disease campaign 2020

New Scientist magazine: Rare disease campaign 2020

CRDN were delighted to recently take part in a new Rare Disease campaign in the New Scientist Magazine published on 24 Sept. It is dedicated to raising awareness of rare diseases featuring exclusive content from key thought leaders (including CRDN!). It discusses the...

Rare diseases: Making the unseen seen

Rare diseases: Making the unseen seen

Contrary to the isolation of lockdown, a vibrant and vital new collaboration emerged. Action for Rare Disease Empowerment (ARDEnt) is a cross-sector coalition of 30 UK-based experts involved in rare diseases. Concerned at the impact of COVID-19 on those affected by...

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

Cancelled! Postponed! How do we roar for rare in the midst of a crisis?

At CRDN our focus is on raising awareness and building networks to address the unmet needs of those affected by rare disease and the professionals that work with them.  So how do organisations like ours maintain momentum during this extended period of lockdown?   We...

Meet two of the beating hearts behind CRDN

Meet two of the beating hearts behind CRDN

For third sector organisations, trustees are the beating hearts behind the scenes sharing ultimate responsibility for governance and direction.  CRDN is proud to have such a talented board at its helm and  we caught up with two of our Trustees, Dr Sarah Leiter and...

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