Updates from the inaugural Patient Advocacy Group meeting

The ESE Patient Advocacy Group (PAG) Affiliate Members Board held its inaugural meeting during the 2022 European Congress of Endocrinology Congress in Milan, in May. This Board consists of representatives from ESE and delegates from PAG Affiliated Member organisations. Learn more about the PAG Affiliated Membership Scheme and its members.

Chaired by Jérôme Bertherat, ESE President-Elect, the meeting was attended by 17 patient group representatives, and discussed the Board functions and priorities. Inequalities around access to care and medication across Europe, building and supporting patient advocacy and patient focused education, were three areas highlighted for a collaborative effort of PAGs and ESE to better support patients with endocrine disorders around Europe.

Following an election process during July, we have now elected three Co-chairs from the PAG membership. These Co-chairs are representatives of the PAG members and will work with the ESE Chair and Office to guide the activities of the Board.

We are happy to congratulate the new Co-chairs:

  • Jo Grey, CEO of the Association of Multiple Endocrine Neoplasia Disorders
  • Peter Lakwijk, Treasurer of Thyroid Federation International
  • Johan de Graaf, Chair of the Dutch Pituitary Foundation 

In addition, we also welcome The Pituitary Foundation UK, Let’s Cure ACC and Acromégales Pas Seulement to our PAG community.