Minnesota State House Reception

Wednesday, February 28th, 2018 10-12:00pm State Office Building Room 500N (100 Rev Dr Martin Luther King Jr Boulevard, St Paul, MN)

State HouseJoin us at a State House Reception as we make the voice of rare diseases heard in Minnesota! This session, state legislators will be voting on a bill to create the Chloe Barnes Rare Disease Advisory Council. The council gives the rare disease community a direct voice to our lawmakers. This year’s reception will feature patient advocates, researchers, and legislators who will talk about the issues that the advisory council will address   Sign up here to let us know you can attend.

What is Rare Disease Day?

On 28 February 2018, people around the world living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. The Rare Disease Day 2018 theme ‘Research’ recognizes the exciting advancements research will be making in the next few years to improve the lives of people living with 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 state, 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 in a number of countries.
  • 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 organisations.
  • 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.