ePAGs – Jamy Scheerhoorn-Pullen

Jamy Scheerhoorn-Pullen is an ERN ReCONNET ePAG representative for Antiphospholipid Syndrome (APS).

In this capacity, Jamy works diligently to ensure that the perspectives and needs of patients are central to discussions and initiatives aimed at improving care for individuals with rCTDs.

She is actively involved with the NVLE (Dutch Association for Patients with Rare Connective Tissue Diseases), where her focus is on patient participation.

In addition, Jamy serves as a board member for the NVLE Fund, which provides financial support to young researchers conducting studies on rare conditions. This role allows her to bridge the gap between patients and the scientific community, fostering a collaborative environment that enhances research efforts.

As a patient herself, Jamy brings a unique understanding of the challenges faced by the rCTD community. She has also served as a caregiver, which has deepened her commitment to advocacy and support for those affected by these conditions. These personal experiences have shaped her passion for ensuring that patient voices are heard and prioritized in healthcare discussions.

Beyond her work with NVLE, Jamy has been involved with other relevant organizations, such as ReumaNederland and Arch. These affiliations have expanded her network and provided valuable insights into the broader landscape of patient advocacy and research.

With a background in finance, Jamy possesses essential skills for effective advocacy and collaboration, equipping her to navigate the complexities of patient needs and healthcare systems.

Outside of her professional commitments, Jamy finds joy in coaching and training her daughter’s hockey team, which is one of her greatest passions. She also enjoys playing hockey herself and engaging in creative activities with her hands in her free time.

Being part of the ERN ReCONNET network is vital to Jamy, as it fosters collaboration among patients, caregivers, and healthcare professionals across Europe. She has made meaningful progress in raising awareness and promoting patient involvement in research and aims to continue developing comprehensive support programs to address the unique challenges faced by those with rCTDs.

Looking ahead, Jamy hopes to further amplify patient voices and drive impactful changes that improve healthcare outcomes for all individuals affected by rCTDs.

Her personal motto, “Love Laugh Dream,” reflects her approach to life and work, as she believes that love, joy, and dreams help achieve both personal and professional goals.