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Women in RARE

We are delighted to launch our newest edition, Women in RARE, proudly supported by Alexion. This edition is an unapologetic celebration of Women of RARE, told through the eyes of our contributors as they lift the lid on the barriers, inequities and lived experiences of being women living with and/or working in rare disease. It showcases the incredible women who are making a profound difference to lives every day. So we ask of you today to take this opportunity to see us, hear us, and please share this edition on behalf of the women in your lives. Read the full edition here:

With her sights firmly set on a career in drug development, upon entering the world of rare disease, Yiwei “Echo” Chen soon came to realise her heart and skill set lay in advocating for this underserved community in China. Forming her own not-for-profit, Echo’s mission is to disseminate educational resources while uniting patients with doctors and industry to create a better and more unified understanding of the challenges those living with a rare disease face every day.

From her first exposure to genetics in high school, aged just 16, Dr Stéphanie Cherqui was hooked. Her early passion for the subject has since turned into a lifelong obsession—one that has led her to achieve great things in the field of genetic science—things beyond the wildest dreams of her 16-year-old self.

Nthabeleng Ramoeli’s challenges as a young person living with Ehlers-Danlos syndrome inspired her to found Rare Diseases Lesotho Association. Since 2017, this small but mighty organisation has been helping to tackle the many cultural and medical barriers faced in Lesotho by people living with rare diseases.

Alongside key stakeholders, including Uniamo (the Italian federation of rare disease organisations), Alexion, AstraZeneca Rare Disease is conducting groundbreaking research to understand the specific impact of rare diseases on women, with the ambition to drive changes that will put them at the heart of the rare disease healthcare ecosystem. Here, Anna Chiara Rossi, from Alexion, and Annalisa Scopinaro, from Uniamo, discuss the report’s significance.

To mark Rare Disease Day 2024, Alexion, AstraZeneca Rare Disease and OrphanDev have published the second edition of their Rare Disease “Crossed views” report, entitled “Rare Diseases: When Women Advocate.”

As part of an ongoing commitment to amplifying the experiences of women across the rare disease ecosystem, the inaugural Alexion, AstraZeneca Rare Disease “Women in Rare” event was designed to connect, develop and empower exceptional female leaders in the rare community with three important goals. Read all about it here:

The term gaslighting is well known in society, but the relatively new term of medical gaslighting is only more recently being acknowledged. Read more about the lived experience of gaslighting – the female perspective, here:

Ever feel like the imposter in the room? Join Dr Mandolen Mull as she shows us how to posture our way out of imposter syndrome.

To mark International Women’s Day 2024, we teamed up with Alexion, AstraZeneca Rare Disease to host a special episode of our RARE Rev-inars, celebrating women in rare disease science and research

Facing her teen years, Alba Parejo experienced the full force of social stigmas around her skin differences, which had a profound impact on her self-esteem. A viral social media post helped her reframe that narrative and led her to find her place as a positive role model and “passionate advocate”.

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