On 26 to 28 May, our member EURORDIS is organizing the eighth edition of the European Conference on Rare Diseases & Orphan Products (ECRD) in Edinburgh, UK. Rare diseases stakeholders from across Europe will get together and discuss crucial themes for the sector.

This biennial conference is the foremost event that unites all rare disease stakeholders from across Europe (patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers). ECRD 2016 will bring together over 80 speakers and more than 700 participants, covering six themes of content over two days: from the latest research, to developments in new treatments, to innovations in healthcare, social care and support at the European, national and regional levels.

The focus in 2016 will be on Game Changers in Rare Diseases. There will also be pre-conference tutorials to ensure participants are equipped to learn as much as possible from the conference.

New meeting formats to enhance the on-site learning experience will be showcased for the first time in Edinburgh and will include a speed networking session, an open-house soap-box lunch session, audience polling, networking lunches and dedicated poster sessions. More info on networking.

Follow the conference on social media with #ECRD2016.

Contact person: Eva Bearryman, EURORDIS, eva.bearryman@eurordis.org

EPF is proud of its members’ and their work. We are delighted to feature one of our 67 member organisations on our blog and share their successes and achievements. This month we interviewed Jana Moravcova, Advocacy Officer at the International Federation of Spina Bifida and Hydrocephalus (IF), just elected as EPF member in March!

1. What’s on the top of your agenda?

 Our three strategic objectives for 2015-2017 are primary prevention of neural tube defects (NTDs) and hydrocephalus; the right to health and access to healthcare; as well as building a strong community of persons with Spina Bifida and Hydrocephalus (SBH) and their families. In the European context we focus on advocacy for right to health of persons with SBH and empowering our members through workshops, webinars, and community building.

2. Why does your organisation exist?

 IF exists to make the voice of people with SBH heard, to advocate for their rights and to consolidate a strong supportive network of persons with SBH, their families, caretakers, healthcare professionals, researchers, etc. IF aims at building the capacity of its members on human rights and the Convention on the Rights of People with Disabilities (UNCRPD). We also support our members with projects and advocacy and representing them at European and international levels.

3. What is your biggest achievement as an organisation?

 IF’s fast-growing expansion in Europe and beyond strenghtened through community building activities, workshops and international conferences is a big achievement for us. It shows that IF responds to a need from the community and gives us a chance to improve access to healthcare of more persons with SBH.  Also, the work of IF in developing countries brings new insights into care in the developed world.

4. What is for you the key benefit of your organisation’s involvement in EPF?

 We expect to have a stronger and more coordinated voice on health policies and issues related to care and involvement of persons with disabilities. Their empowerment is a key area for us as we want to make our members – persons with SBH and their families – stronger and more confident self-advocates. IF is also a member of the European Disability Forum, which enables us to work on the promotion of rights for people with disabilities from a human rights’ perspective, while EPF focuses on public health and social care for patients. Our membership in EPF and EDF are complementary.

5. What’s the main misconception about your disease area?

 IF advocates for primary prevention of neural tube defects through mandatory food fortification; we do not consider abortion a form of prevention. Food fortification with folic acid is the only primary prevention method that reaches all women of childbearing age and according to statistics reduces the incidence of SBH affected pregnancies.

On 19^th and 20^th March, the EPF Youth Group gathered in Brussels for its two-day Spring Meeting to discuss key issues, such as capacity development, preparatory work for the Roundtable on Transition to Adult Care and for the Youth Group’s participation at the European Youth Event in May 2016 (#EYE2016).

First on the agenda was an assessment of the capacity development tasks implemented in 2015. The Youth Group acknowledges the advancement and how they feel stronger and self-aware but also took the opportunities to share their views on weaknesses, such as the commitment of members, plus how to be more active and engaged with the EPF in general. The Youth Group identified some concrete actions to enable a better involvement of current and new members.

The discussion moved onto the key topic for 2016: Transition to Adult Care. The lack of information and guidance from healthcare systems, young patients being undermined by healthcare professionals, the risk of discontinuity in adherence to treatments and the sense of the unknown and feeling scared by change were just some of the common themes debated in the room. The Youth Group acknowledged the consultant-patient relationship and diagnoses can differ greatly in adult care compared to children’s care. They stressed there is still lack of legal and financial framework for transition, where clear leadership and the role of a Transition Coordinator need to be defined. Local patient organisations would also be more involved in the transition process, together with the need for peer-to-peer support and specialist care for young patients.

Finally, the Youth Group considered their plans for the European Youth Event – a unique platform to exchange ideas and perspectives on youth-related issues – which will take place from 20^th-21^st May at the European Parliament in Strasbourg. They will be hosting their own workshop in cooperation with the European Multiple Sclerosis Platform titled, “Young Patients: Ready, Brilliant and Able to Work”, which will aim to challenge expectations and change attitudes of employers who view young people with chronic diseases differently.

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu

On 21^st March, the Youth Group conducted a roundtable on transition from paediatric to adult care, attended by representatives of patient organisations, health groups, as well as healthcare professionals and delegates of Member States.

The objectives were to raise awareness of the challenges and potential pitfalls that young patients face when transitioning to adult care, to contribute to building a safe support network and to highlight best healthcare practices for the transition process.

The day kicked-off with a role play to show young patients’ perspective of transition and the problems they may encounter. This was followed by a sequence of presentations sharing real-life case studies and project findings on moving into the adult healthcare system, including:

• Models of Child Health Appraised (MOCHA) – an EU-funded project into child health systems in Europe, with a focus on children’s rights;
• The Milestone Project – an EU-wide study on managing the link and strengthening transition from child to adult healthcare for young patients with mental health conditions;
• Anna Zaghi – a member of the EPF Youth Group, who spoke about an Italian pilot project on transition for young people with diabetes;
• The European Society for Paediatric Oncology (SIOPE) – a perspective on transition in paediatric haemato-oncology.

It was apparent that there were similar issues facing young patients when transitioning that need attention, such as the lack of resources and for healthcare professionals to play a bigger role in the process. Young patients want to be considered as whole persons, not just a diagnosis. To this end they should be encouraged to be more empowered and self-manage their condition, whilst healthcare professionals should have a more holistic approach and be trained to better communicate with young patients facing the transition process. What’s more, there should be a greater emphasis on primary care and prevention as well as standardising the responsibilities of Transition Coordinators, profiles that are not often in place in national healthcare systems. The role of coordinators would be to centralise information about young patients in transition to adult care and facilitate a smooth process.

Report and recommendations on transition to adult care will be shared and made publicly available on the EPF website.

Contact persons:

Valentina Strammiello, Programme Officer, valentina.strammiello@eu-patient.eu

Laurence Woollard, EPF Youth Group Intern, laurence.woollard@eu-patient.eu