Sep. 16, 2015
Posted by Jennifer Huron
Slogan: Join us in making the voice of rare diseases heard
As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the founder of this amazing event. We look forward to working with everyone to build on the successes of previous years and make this the best Rare Disease Day yet. Please click on this link or read the official announcement below.
Next year, 2016, will mark the ninth year that the international rare disease community celebrates Rare Disease Day.
On February 29, 2016, people living with or affected by a rare disease, patient organizations, politicians, caregivers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.
The Rare Disease Day 2016 theme ‘Patient Voice’ recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.
Patients and patient advocates use their voice to bring about change that:
- Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels
- Increases and improves rare disease research and orphan drug development
- Achieves equal access to quality treatment and care at local and national levels, as well as earlier and better diagnosis of rare diseases
- Supports the development and implementation of national plans and policies for rare diseases
- Helps to reduce isolation sometimes felt by people living with a rare disease and their families
Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world.
The patient voice:
- Is stronger when patients receive training so that patient advocates are equipped with the skills and information that they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organizations.
- Is vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
- Is increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the R&D process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure that medicines are developed more efficiently and in turn will result in patients accessing more, better and cheaper treatments at an earlier stage.