It’s Rare Disease Day around the world today, an excellent opportunity for patient groups to make themselves heard. Rare Disease UK is using this opportunity to launch a new report at its event this afternoon at the House of Commons. For patient groups that are not part of Rare Disease UK, I recommend you join the campaign asap. Here’s what they say…
Dear RDUK member,
As most of you will probably know by now, today is Rare Disease Day! This is the 4th Rare Disease Day and what began as a European initiative is now marked across the globe.
This is an especially important Rare Disease Day for us as we are launching our new report ‘Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy’ at the House of Commons later – we are delighted that so many of you will be joining us there and at receptions taking place at the Northern Ireland and Welsh Assemblies. We have already had a very successful launch at the Scottish Parliament last week.
This report outlines our recommendations for a strategy for rare diseases and is a product of a year and a half of work in collaboration with our members and the broad rare disease community. This report will be presented to Earl Howe, Minister at the Department of Health, at the House of Commons reception later today. The report is available at: www.raredisease.org.uk/documents/RD-UK-Strategy-Report.pdf. If you would like hard copies, please do let us know.
Many of our members in the UK and our partners across the world are also holding activities to mark Rare Disease Day and we look forward to hearing feedback from these events. More information about what’s happening across the globe is available at: www.rarediseaseday.org.
The theme for Rare Disease Day this year is “Rare but Equal”. This aims to draw attention to the:
- Gaps in health that exist for rare disease patients between and within countries in the EU.
- Gaps in health that exist for rare disease patients compared to other sectors of society.
The campaign will serve to advocate for:
- Equal access for rare disease patients to health care and social services.
- Equal access to basic social rights: health, education, employment, housing.
- Equal access to orphan drugs and treatments.
By working collaboratively, we can raise awareness of rare diseases and ensure that they rightfully are given the priority they should be entitled to.