Game Changers in Rare Diseases Delivering 21st century healthcare to rare disease patients: Together we can change the future!
This is the official video for #RareDiseaseDay 2017! Research: With research, possibilities are limitless!
Rare Disease Day is a patient-led campaign that brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity – everyone can get involved!
The Rare Disease Day 2017 theme is research and slogan “With research, possibilities are limitless”. Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care. The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases.
People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year’s video draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’.
Share the video to become part of the international campaign!
Bringing together all rare diseases, across all European nations
Following on from seven successful events, 2016 sees the 8th year of the ever-growing European Conference on Rare Diseases & Orphan Products. This biennial conference is a unique opportunity to come together and exchange: it is the event at which to connect and share with all other members of the rare disease community.
The ECRD is the only event which, from its small beginnings, has united all rare disease stakeholders from all European nations- patients and patient representatives, healthcare professionals and researchers, industry, payers, regulators and policy makers alike- in the fight against rare diseases. The ECRD now brings together over 80 speakers and more than 800 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. 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 to connect patients, researchers and industry, an open-house “soap box” lunch session, interactive roundtables, audience polling, networking lunches / coffee breaks and dedicated poster sessions.
The focus in 2016 will be on Game Changers in Rare Diseases. We will also be holding pre-conference tutorials, which will ensure that you are equipped to learn as much as possible from the conference.
Exhibit at the ECRD and you will expose your service or company to over 800 international participants.
We look forward to seeing you there!
What is a Rare Disease?
A rare disease is classified in Europe as being a condition which affects less than 1 in 2,000 individuals. Because rare disease patients represent the minority, there is often a lack of public awareness. Common issues facing patients and families living with rare diseases include delayed diagnosis, access to care and medication and a feeling of isolation. This is true across different countries, cultures and all rare diseases.
What are Orphan Products?
Orphan products are medicinal products intended for the diagnosis, prevention, and treatment of rare diseases.
What is ECRD?
The European Conference on Rare Diseases & Orphan Products (ECRD) is the unique platform/forum across all rare diseases, across all European countries, bringing together all stakeholders: patients’ representatives, academics, health care professionals, industry, payers, regulators and policy makers.
ECRD covers research, development of new treatments, healthcare, social care, information, public health and support at European, national and regional levels.
ECRD provides the state of the art of the rare disease environment, monitoring and benchmarking initiatives.
Why attend ECRD:
- Network with all stakeholders in the rare disease community
- Receive the most current facts, figures and trends from regulators, evaluators and payers on where we stand on orphan medicinal products
- Find out what you can expect from European Reference Networks
- Discover important breakthroughs in next generation sequencing, stem cell therapy and diagnosis
- Contribute to the debate on patient involvement in the benefit-risk assessment
- Hear about innovative solutions and programmes that address the social and other non-medical needs of rare disease patients
- Explore emerging pricing, reimbursement and access trends together with those responsible for the markets
- Get new ideas/best practices on how to improve treatment for patients or deliver it more effectively
- Learn about early access initiatives fostering the development of orphan medicinal products to get treatments to patients faster
- Present your work to a wide, multi-stakeholder audience as a poster presenter
….. and get motivated and inspired to be a game changer!
Why attend ECRD as an industry representative?