pLOG

2025-07-28

PatientsForce Launches Rare Disease Drug Patient Support Program: Compassionately Accompanying and Illuminating Hope for Rare Disease Families

The new drug targets children with rare diseases who have congenital developmental issues. Its treatment requires caregivers to prepare the medication daily and administer injections themselves. Beyond the drug itself, caregivers must become proficient in handling various supplies, including solvent syringes, solvent needles, injection syringes, alcohol swabs, adhesive bandages, and sharps disposal containers. Although the manufacturer provides a comprehensive instructional video nearly 15 minutes long, caregivers cannot effectively use the medication without hands-on practice. Meanwhile, hospital nursing staff have limited time to offer complete education to families. At this critical juncture, the involvement of patient educators becomes essential for initiating treatment and providing ongoing support.

PatientsForce arranges for professional patient educators to provide one-on-one individualized training directly at clinical sites. This includes hands-on practice with injection equipment, explanations on medication storage, preparation key points, and injection sites. Educators also help caregivers understand and rehearse potential injection scenarios and how to respond—for example, children may resist or struggle due to anxiety. Educators share practical experiences and advice in advance to gradually ease caregivers’ worries and fears, helping them confidently and successfully carry out each treatment at home.

On the day of the first patient service, there was an opportunity to accompany the patient educator into the hospital room and witness the administration of Taiwan’s very first dose of this new medication covered by national health insurance to a child. The mother listened attentively to the educator’s explanations and practiced handling the injection equipment hands-on, while the father recorded the training session to review later at home. Encouraged by the educator, the child repeatedly watched the instructional video and discussed the injection process with the mother, bravely facing the illness and optimistically accepting treatment. Watching this united family working together, the project team deeply realized that the PSP is not only an extension of medical services but also a source of family support and hope.

After treatment initiation, patients may find it challenging to consistently adhere to their daily regimen. To support long-term treatment persistence, this project plans to integrate the digital tool “MediPASS” in its second phase, providing daily medication reminders to help caregivers maintain stable adherence to medical instructions. Meanwhile, patient educators will continue to play a supportive role by offering regular check-ins and psychological support, encouraging both the child and family to persist with the treatment, thereby enhancing their ability to live with the disease and improving overall family quality of life.

This experience not only highlighted the indispensable role of patient educators throughout the treatment journey but also reaffirmed the core value of patient support programs—to be truly “patient-centered,” creating a care experience that is reassuring, accessible, and compassionate for patients and their families.