RD-Connect, NeurOmics and EURenOmics are hosting a rare disease outreach day on 3rd May in Berlin, Germany. The event aims to brimg together stakeholders from the rare disease community to share the value of the tools created and the knowledge generated through these projects.
Invitation to Outreach Day
Tuesday 28th February 2017 marks the tenth international Rare Disease Day. Hundreds of patient organisations from all over the world will be holding events designed to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The theme for 2017 is research. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
RaDaR and RareRenal.org are proud to support Rare Disease Day and the campaign to boost research into rare diseases.
Further details of the day and a list of worldwide events can be found at:
Thursday 9th March 2017 marks World Kidney Day (WKD) – an annual global awareness and education event.
This year the theme is Kidney Disease and Obesity.
Every year, countless local, national and international events are organised by kidney charities, healthcare professionals, patient groups and individuals.
We encourage everyone to get behind the campaign and try to organise an activity or event to draw public attention to the importance of kidney health – what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease.
Further details can be found at the World Kidney Day UK website:
The National Registry of Rare Kidney Diseases (RaDaR) recruited its 10,000th UK patient in January 2017. RaDaR is an initiative by UK kidney specialists (the Renal Association). It is designed to pull together information from patients who have certain rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.
This work is done in partnership with patients. Where the research leads to practical benefits, such as better diagnosis, treatments or general advice this will be publicised on this website.
Further details about the registry can be found here.
Many thanks to the UK Renal Registry, the PKD Charity, British Kidney Patient Association and Kidney Research UK for supporting this valuable initiative.
It is a fantastic achievement and a testament to the hard work of all the renal units and Rare Disease Groups involved.
Congratulations and here’s to the next 10,000!