Patient advocates – ePAGs

What are the ePAGs?

European Patient Advocacy Groups (ePAGs) bring together rare disease patient advocates who are actively involved in the work of the European Reference Networks.
Each ePAG corresponds to the scope of one of the 24 ERNs, aligning patient organisations and clinicians, experts and researchers working on the same rare or complex disease or highly specialised intervention.

ePAG advocates represent the interests of the wider patient community to ensure that the needs of people living with a rare disease are included in the strategic and operational delivery of the networks.

In order to ensure a higher level of involvement of patients in the decision and opinion-making processes, EURORDIS has established ePAGs for each established ERN. ePAGs bring together elected patient representatives and affiliated organisations who will ensure the patient voice is heard throughout the ERNs’ activities. ePAGs are formed of member organisations and elected representatives.

ePAG Tasks

Patient representatives participate in all BOND governance bodies, bringing their perspective on the organisation and management of the network, specifically to:

  • ensure and promote that clinical care is patient-centred and respects patients’ rights and choices
  • ensure transparency
  • monitor ethical issues
  • ensure evaluation of patient experience
  • contribute to the development of patient information, policy, good practice, care pathways and guidelines
  • participation in ERN evaluation

ERN BOND patient representatives

5 patient advocates are involved within the BOND’s activities, from 5 different patient associations.

ePAGs members co-lead the working group “Visibility Towards Patients & HCP” which works for an effective communication and engagement of the end users and all the relevant stakeholders.
Concrete participation of ePAGs overall facilitates the Network to develop cost-effective supportive environment that enables citizens to become more proactive in co-defining and implementing healthcare plans.

Rebecca Tvedt Skarberg, lives in Oslo, Norway. Being born with osteogenesis imperfecta her interest in disability rights, equity and patient advocacy started from an early age. Her main goal has always been to spread awareness, knowledge and independency for people with rare conditions.

Rebecca is a trained social worker with additional degrees in psychology and counseling. She worked for the Norwegian National Welfare office (NAV) 2001 – 2014. Rebecca has worked for the Norwegian National Advisory Unit on Rare Disorders (NKSD) since 2014.

Rebecca has been engaged in international volunteer work through Osteogenesis Imperfecta Federation Europe (OIFE) and EURORDIS. In 2015 she contributed to the establishment of ERN BOND and was elected ePAG for ERN BOND in 2016. She has been a member of the steering committee in ERN BOND from the start and has also contributed in many of the working groups. She attended EURORDIS Leadership school of 2019. She has contributed to the establishment of the EuRR-Bone registry from 2020, especially working on patient involvement. She is on the advisory board for the Norwegian National registry for rare bone disorders. In 2019-2021 she served on the Rare2030 panel of experts. In 2021 she was awarded the Black Pearl volunteer award.

Inês Alves (DVM) has a degree in veterinary medicine, Oporto University, a post-graduation in soft tissues surgery, and is a Ph.D. student, Évora University, Portugal. Her advocacy involvement in rare bone conditions started after becoming the mother of a child with achondroplasia in 2012. She is member of the Committee for Orphan Medicinal Products (COMP) at the European Medicine Agency; ePAG and steering committee member in ERN BOND; founder and president of ANDO Portugal, the Skeletal Dysplasia National Association; co-leader of the Patient Outcomes at EuRR-Bone; EUPATI fellow and EUPATI Portugal vice-President; founder and first chair of the European Rare Bone Forum (ERBF); co-leader of the Translational Outreach working group of GEMSTONE COST action; member of EURORDIS E-rare and Rare2030 expert panel and a patient expert at EMA and IMI. One of her main interests is translational research in skeletal dysplasias and now, focusing on kinetics research in people with achondroplasia. ORCID ID: 0000-0001-8963-4736

Tenna Toft Olesen, Senior Consultant, diagnosed with X-linked Hypophosphatemia and a mother to a child with XLH. She is the president of XLH Denmark Association and ePAG in ERN BOND.
Bio extracted from https://xlh-patientforeningen.dk/about-us/

Read the interview with Inês Alves

Network ePAGs inclusion procedure

Due to the complexity and low prevalence of rare diseases, as well as to the limited body of knowledge, experience and expertise in the field of rare diseases, the role of rare disease patients (as experts in their diseases) in the development of ERNs is fundamental. Therefore, the document has been created in order to attract new ERN BOND ePAG advocates for a higher level of involvement of patients in the decision and opinion-making processes is essential to ensure the successful development of ERNs.

Find here the Network agreement on the rules for ePAGs