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

9 patient advocates are involved within the BOND’s activities, from 7 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 Sylvest was born in 1981 and lives in Copenhagen, Denmark with her husband and twin daughters. Tenna was diagnosed with X-linked Hypophosphatemia (XLH) at around 18 months as the first in her family. One of her twin daughters has inherited XLH. Tenna has a master’s degree in political science and works as a Senior IT Consultant in the Ministry of Foods, Agriculture and Fisheries in Denmark. In 2018 Tenna co-founded the Danish patient organisation for XLH where she has served as president since 2018. The Danish XLH organisation also includes patients with HPP. In 2017 Tenna helped establish the International XLH Alliance together with representatives from 5 other countries and currently serves as Co-Chair. Tenna has been a member of the ERN BOND ePAG group since 2019.

Liana is an Italian language teacher and is the parent of a patient with Multiple Osteochondromas. She beame involved with A.C.A.R. (the Italian Patient Association for Multiple Osteochondromas, Ollier disease and Maffucci syndrome) in 2017 and her role has focused on international relations through connecting with other Patients Associations throughout Europe and collaborating on networked initiatives.
The increasing importance of the patient voice remains especially important to her (given that she witnessed first hand the struggles that patients with these rare bone conditions face on a daily basis). In 2021, Liana was offered the opportunity to represent A.C.A.R. at the Post Graduate School of Health Economics and Management (ALTEMS), and study a Master’s degree in Patient Advocacy Management. An experience which has allowed her to further recognise the strategic value and importance of integrating the patient voice within the context of each stage of the medical research process.

Born in 1967 in Milan, Italy. Patient with achondroplasia, Marco Sessa is President since 2009 of Italian Association on Achondroplasia AISAC (Associazione per l’Informazione e lo studio dell’acondroplasia). He Degrees in 1994 in Political Science and work for 10 years as Strategic analyst for the energy sector. Since 2000 is Member of LEDHA Italian Association for the defence of right of people with disability. Writer, Blogger, in most important Italian Magazine on disabilities and on 3rd sector. Partner in VITA SPA (editor company of magazine VITA). Member in differents international Patients forum. He’s curios, and passionate in all activities is involved. His hobby are to read, to Sail, and to walk.

Nadine obtained her Master’s Degree in “Molecular Medicine” and continued her academic career as a Ph.D. candidate in Biochemistry with a focus on the rare disease Fibrodysplasia Ossificans Progressiva (FOP) and bone morphogenetic protein (BMP) signaling in an age-related context. She has a broad education in Molecular Biology, with a specific interest in understanding biomedical aspects of diseases. Moreover, Nadine is not only an FOP researcher but also lives with FOP and is in addition the vice-chair of the German FOP patient organization and a board member of the International FOP association’s board of directors. She is a highly active patient advocate who is determined to do everything she can to help find a cure for FOP.  She found her passion in raising as much awareness and funds as possible to educate people and identify the yet undiagnosed. In the recent past, the focus of her patient advocacy activities started to shift towards patient engagement and patient centricity.
Nadine is excited to contribute her expertise as both, a patient with FOP and an FOP researcher, which is a unique combination that empowers me to have a combined insight into both perspectives.

Claudia Finis is a psychologist and works as a research associate at the Berlin Institute of health at Charité in the field of rare diseases. In her work, she always combines the scientific and patient perspectives. She is active as a health policy representative for the German OI organisation (DOIG). Being born with OI she also represents patients at the Federal Joint Committee of Germany. She works at European and national level as a patient representative in the development of guidelines. As a women’s counsellor at the University of Dortmund for many years, it is important to her to always include the aspect of women’s health.

DOIG – Deutsche Gesellschaft für Osteogenesis imperfecta – Betroffene e.V.

Claudio Pirola, born in 1959, lives near Milan in Italy, and is the father of three boys. Graduate in Political Science, Interpreter, he shared his professional career focused on Reinsurance with growing interest in respect of disability rights and patient advocacy. In 1998, Claudio and his wife adopted a child with a limb deficiency. This experience led him to join Raggiungere, the Italian Patient Association for families with children born with a limb difference, where he was appointed as a Chairman for a period of 10 years, developing proactive contacts at national level with Institutions, Biorobotics research centres, universities, writers, paralympic athletes and artists. This allowed Claudio to share knowledge and raise awareness about disability. Since 2020 he is Chair of DysNet, a European federation of associations representing people affected by Dysmelia. Thanks to this role, he has been consolidating relationships with EURORDIS (SPAG Member), EDF and EESC, with a specific interest in limb difference/deficiency, bones and congenital diseases in general.

Susana Noval Iruretagoyena has a degree in teaching and pedagogy, and is an expert in early stimulation and disabilities. She is the director of the ALPE Achondroplasia Foundation, a Spanish patient advocacy organization with an international scope.
Her interest in working on skeletal dysplasias began when a baby with achondroplasia was born in a very close family 27 years ago. Since then, she has worked in patient advocacy, first as a volunteer and later becoming ALPE team coordinator and later director. 
She is an expert in Medicines, research and development (Eurordis), ePAG (Eurordis), founding member of the European Skeletal Dysplasia Alliance, founding member of the Latin American Network of ASDD (Achondroplasia and other skeletal dysplasias with dwarfism), member of ICOSEP (International Coalition of Organizations Supporting Endocrine Patients) and  expert member of different advisory committees for the research of skeletal dysplasias.

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.