Jill Prawer joins as Rare Diseases Project Manager

Feb 23, 2023

We are delighted to announce that Jill Prawer will join the FH Europe effective Feb 28, 2023, as Rare Diseases Project Manager.

In her role Jill will be responsible for patient advocacy and patient support projects focusing on rare familial lipid conditions – HoFH and FCS. Jill brings unique experience and expertise to FH Europe. As a person living with FCS herself, she understands very well the needs and challenges of rare diseases patients. Faced with the reality of every rare disease patient – little awareness of her condition among clinicians and seeking support to manage her condition, she founded Action FCS, a UK based charity supporting people with FCS. Acting as Chair of this volunteer-led organisation, she is also familiar with the day-to-day challenges of Patient Advocacy Groups (PAG) and non-profit organizations in general. Successfully completing the EUPATI Patient Fellow Programme on medicines development, and the Eurordis Summer School on the Medicines Regulatory process enabled Jill to contribute to meetings at the European Medicines Agency and the national drugs reimbursement agency in the UK, known as NICE, where she represented Action FCS community.
“I’m really excited to be working with the team at FH Europe, specifically focusing on the rare lipid conditions HoFH and FCS. I know first-hand that early diagnosis is the first step in helping patients to best manage their condition, and that patients day-to-day experience can be much improved by better understanding and knowledge from healthcare professionals, and informed support from their friends and family.

Better understanding, support, and validation can help to break what can be a very isolating experience of living with a rare disease. Patient involvement in the drugs regulatory process is also key to a better outcome for regulatory approval. Hearing the lived experience of patients with a rare condition, personalises the impact of a therapy on the day-to-day lives of rare patients, something which often does not translate to clinical trial results.

I’m looking forward to contributing to raising awareness of HoFH and FCS and improving knowledge and awareness. I can’t wait to meet patient Ambassadors and other Network members to work together to develop resources for and growing the ambassadors’ programme.” – said Jill.

With the growing opportunities and needs on the horizon as well as well-established collaborations FH Europe has developed in the last 3 years in the area of rare diseases, having a dedicated person on the team is key.

I am incredibly pleased to welcome Jill to our Team. As we grow the organization and increase the number of the Network members, it is critical to ensure we can deliver on our mission. Jill will lead engagement with the rare disease community, internally with the Network members, and with external stakeholders: partner patient organisations like EURORDIS, RDI (Rare Disease International), medical and scientific communities, HCPs, the industry, HTA bodies, insurers and others. Her very personal experience and great personality will be an asset to our rare diseases’ patients’ community!” – Magdalena Daccord, FH Europe’s Chief Executive.

In her spare time, Jill is the hands-on Chair of Action FCS, and enjoys watching a good game of football – particularly the women’s game. This summer should be particularly entertaining as it’s the women’s world cup! This will surely help her get on very well with some of our Scientific Advisors from the get-go.

Join us in welcoming Jill and wish her all the very best of success. You can connect with her on LinkedIn and as of March 1 reach her via email Jill@fheurope.org.


FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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