Rare disease community appeals to EU and member states to move into a new era of collective decision-making in health
14 May 2020, Paris - Today is the opening day of the 10th European Conference on Rare Diseases & Orphan Products. Conference organiser EURORDIS-Rare Diseases Europe and co-organiser Orphanet are appealing to the EU and member states to step up efforts to put in place common actions across EU policies that will advance the health and wellbeing of people in Europe.
As is the case for COVID-19, there is a clear twofold added value to grouping efforts at the EU level in order to tackle rare diseases. First, to improve the health outcomes of the 30 million people living with a rare disease in Europe. Secondly, to minimise the impact on, and maximise potential return for, the economy/ies of the EU and member states.
People living with a rare disease already know so well the lessons that communities around the world are now being forced to learn as a result of the COVID-19 pandemic. Coronavirus aggravates their health, social, economic vulnerabilities in both the short and long term.
We must quash this egocentric rhetoric emerging in some countries. It fragments Europe into diverging national-level decisions. We must combine our capacities and power at the European level, to ensure health, equity and solidarity for every individual citizen.
Yann Le Cam, Chief Executive Officer, EURORDIS, commented, “We must quash this egocentric rhetoric emerging in some countries. It fragments Europe into diverging national-level decisions. We must combine our capacities and power at the European level, to ensure health, equity and solidarity for every individual citizen. We appeal to national governments and the EU institutions wherever possible to increase efforts in the coming year and decade to collaborate across the board on relevant EU policies that will strengthen healthcare systems.”
He added, “There are many actions that the EU can take: Invest in research and innovation. Adopt legislations enhancing competitiveness and addressing unmet medical needs. Expand and consolidate the European Reference Networks. Create a structured EU approach to ensure sustainable access to orphan medicines and new transformative gene/ cell therapies for patients. To name but a few. A lack of EU coordination is both detrimental to the health of people living with a rare disease and has an unnecessary negative impact on the economy.”
Ana Rath, Director, Orphanet, commented, “Now more than ever, the EU has a vital role to play in improving the health of its citizens. ECRD 2020 focuses on how to build policies and services over the next decade that will improve the journey of living with a rare disease for patients and families. The conference builds on the work of the ongoing Rare2030 Foresight study, which will conclude next year with a comprehensive set of key recommendations to policy makers on how to improve rare disease policy.”
About the European Conference on Rare Diseases & Orphan Products 2020
The ECRD is recognised globally as the largest, patient-led rare disease event. Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community - patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.
ECRD 2020 takes place exclusively online 14-15 May. Discussions at the conference will go towards informing and building the future ecosystem of rare disease policies and services. For more information visit: www.rare-diseases.eu/.
About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 900 rare disease patient organisations from 72 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Orphanet is a unique resource, provide high-quality information and data on rare diseases, contributing to improving the diagnosis, care and treatment of patients with rare diseases.
Orphanet maintains the Orphanet rare disease nomenclature (ORPHAcode), essential in improving the visibility of rare diseases in health and research information systems.
Thanks to its network of 40 countries, Orphanet aims at orienting patients and doctors to the relevant expert resources, in Europe and beyond.
All photo credits Beth Moseley Photography
Writer, Rebecca Atkinson and Illustrator, Kate Read have created the ‘My Little Lockdown Life in a Box Project’ to keep children and families colouring, cutting and snipping during lockdown to build a tiny version of their lockdown homes, complete with PE with Joe Wicks on the titchy telly, (huff, puff) tiny home-school work (yawn, yawn) and teeny weeny messages of thanks to NHS workers (our true heroes).
The ‘My Little Lockdown Life in a Box’ is a family project which Atkinson and Read hope families will get together around the table and use to talk about what has happened and how it’s affected them, as they build a tiny lockdown world just like their own.
Kate Read, author and illustrator said, "The project has been specially designed to enable families to play and create stories around life in lockdown to help children process and understand why life has gone a bit… topsy turvy!" The duo will be sending 100 shoebox kits to families affected by disability in their home town of Norwich, thanks to a donation of empty boxes from local children’s shoe brand Start-Rite and funding from The Fore.
"We are filling these boxes with felt tips, scissors, glue and a printed copy of the project so children can start building and playing right away with a kit that is relevant to their lives right now,” explains Atkinson. “When the crisis has come to pass we hope to bring these boxes together to build a tower block of shoebox homes for a public exhibition at The Forum in Norwich. For those who are not local to us, we have made the project available to download for a small fee to support our organisation. We hope the project will provide hours of fun for many families."
To find out more and to purchase your very own 'My Little Lockdown Life in a box project' click on the website button below.
ToyLikeMe is an arts and play based not-for-profit organisation based in Norwich and York. Who start playful conversations with children about disability and health to boost self-esteem and grow open minds.
Rare Revolution Editor