Launch of the Parliamentary Advocates for Rare Diseases
The 17th October 2017 was an important date for the millions of European citizens living and working with rare diseases – the new Parliamentary Advocates for Rare Diseases network was launched. The event was held at the European Parliament in Brussels, and is the fruit of ongoing efforts spearheaded by EURORDIS Rare Diseases Europe to ensure that European stakeholders continue to unite to tackle the deep-seated challenges and often also inequalities- which rare diseases create.
The network was launched during an event entitled ‘Juggling Care and Daily Life: The Balancing Act of the Rare Diseases Community’ and included the presentation of highlights of the results of the survey conducted by EURORDIS through its Rare Barometer Voices tool, to which 3000 people from 42 countries responded. This survey provided invaluable, concrete data concerning the real impact on patients and carers living with a rare disease. The results were striking, and demonstrated just how pervasive this impact can be, across so many aspects of daily life:
- More than 70% of patients have difficulties with daily activities and tasks such as preparing meals and handling household chores, with motor and sensorial functioning such as visual, hearing and body positioning issues, and with social life as maintaining relations with others.
- 30% of carers spend over 6 hours a day on disease-related tasks with over 60% of these carers being women.
- Having to reduce or stop professional activity due to illness occurs to 70% of rare disease patients and carers.
- Feelings of depression and unhappiness are three times more common amongst rare disease patients and carers compared with the general population.
These figures were relayed during the meeting, and patients shared their own testimonies of the challenges they face due to the rarity of their conditions. Members of the European Parliament were invited to participate to the launch on 17th October which was held under the auspices of MEP Françoise Grossetête, and of course to join the new network of Parliamentary Advocates for Rare Diseases, the secretariat of which will be held by EURORDIS. The goal of the network is essentially to unite Members of the European Parliament as well as Members of National Parliaments, who are dedicated to:
- exploring and discussing specific challenges faced by people living with a rare disease and ensuring stronger EU-wide action through targeted support.
- shaping political input for future legislation and programmes, ensuring that rare diseases are made an integral part of EU, national and regional programmes in health, research, social affairs and other relevant policies.
The meeting was very well attended with MEPs on-site as well as members of civil society, EU institutions, as well as industry and Several speakers, stressed the need to address the sorts of issues outlined by the recent survey, in order to help those living with a rare disease to live a full life with the same opportunities as any other European citizen. Mrs Grossetete MEP opened the event with a keynote recounting her long-term commitment to rare diseases and delineating the need to act collectively at EU level. Martin Seychell, Deputy Director General of DG Sante (European Commission), shared his perspectives in a talk entitled ‘EU policy for rare diseases: what still needs to be done to improve patients’ daily life’, highlighting the achievements to-date of the European Commission and the activities to come. This is an exciting time for rare diseases, with the launch of initiatives such as the European Reference Networks and an imminent European Joint Programme Co-Fund for Rare Diseases. However, the participants agreed that it is important to recognise that these efforts will not address all issues for people with rare diseases, and there is still a major need for pan European collaboration. Recommendations adopted by the EU Committee of Experts on Rare Diseases and the Commission Expert Group on Rare Diseases must be implemented at national level – especially the most recently adopted set of Recommendations (to Support the Incorporation of Rare Diseases to Social Services and Policies) which, if implemented in member states, could address some of the issues highlighted by the EURORDIS survey. National Plans and Strategies for Rare Diseases need to be evaluated -and renewed, in some cases- to ensure that the actions defined in these watershed national documents are actually implemented and have an impact. The European Commission’s future plans to support the identification and sharing of good practices would be very relevant for the rare disease field, and it is important to ensure appropriate mechanisms (such as Joint Actions or equivalent funding initiatives) to achieve such goals in the rare disease field.
