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Achieving more together: Women’s Network for Rare Diseases

On 9 January 2025, a group of committed women came together at the Berlin Institute of Health @ Charité (BIH) to officially launch the Women in Rare Diseases network - a day full of inspiring encounters, exciting discussions and fresh ideas.

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Rare diseases need special attention – and strong networks! This is exactly what Women in Rare Diseases aims to be: a space that brings together women with different expertise, who strengthen each other and together make a difference for rare diseases. The possibilities and ideas are as diverse as the participants themselves – from creating new impulses and knowledge transfer to initiating concrete projects.

Exchange, ideas and plenty of energy

After a warm welcome from the organisers, Franziska Krause, Mara Hartung (BIH), Sanna Börgel and Eva Thull (Eva Luise and Horst Köhler Foundation), the meeting began with an informal get-together. Questions such as “How did I earn my first money?” and “What am I particularly good at?” quickly got the participants talking and revealed the first common ground.

Corinna Grasemann, paediatric endocrinologist and head of the Centre for Rare Diseases at Bochum University Hospital, gave an inspiring keynote speech on the importance of networks, especially in specialised areas such as rare diseases. She also emphasised: “It’s about joining forces, not setting yourself apart from other groups.

Workshop groups, facilitated by Tina Gundlach-Hauf, then developed the cornerstones of the network. Topics ranged from values and communication structures to initial project ideas. It was particularly valuable that each participant brought her individual strengths and perspectives – whether from research, politics, communication or working with patients.

Women in Rare Diseases is still in its infancy, but the kick-off has shown that together we can achieve a lot to strengthen care and research for rare diseases – with expertise, passion and the power of the new network.

More allies wanted!

All women who are professionally involved in the field of rare diseases are cordially invited to become part of this growing community. For further information, please contac Franziska Krause or Mara Hartung .

 

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