Infomation via Rare Disease UK

Don’t forget to have your say! Welsh Consultation open

The Welsh Implementation Plan is out for consultation, open until 23 May 2014. It’s an opportunity for patients and patient organisation representatives to have their voice heard by the Welsh Government so please do take this opportunity to respond. Further details about how to do this can be found here.

The Welsh Government in collaboration with Rare Disease UK is hosting a consultation event to canvass the views of patients, families and patient organisation representatives with an interest in the Welsh Draft Implementation Plan for Rare Diseases.

The event will take place on 14th May between 1.00pm -3.30pm in the Heath Hospital Campus, Cardiff. Lunch will be provided for delegates from 1.00pm and the event will start promptly at 1.30pm. Please email Emma, our Development Officer in Wales, ■■■■■■■■■■■■■■■■■■■■■■■■■■■ for more information or if you would like to register for the event. Please note that there is limited space available so places will be allocated on a first come, first serve basis. We look forward to hearing from you!

European Commission: Funding for Rare Disease Research

The European Commission is providing €330 million in funding for rare disease research as part of its Horizon 2020 programme. Find out how to access it at Findacure’s workshop “European Commission Funding for Small Patient Groups”, taking place Friday, 16th May.

This event will be a half-day event from 1:30 to 5:30pm in central London (near Bank station). The day will feature an overview of the Horizon 2020 call and its relevance to rare diseases. A successfully funded patient group will then share their tips about applying to the European Commission, followed by two talks that delve into key aspects of the application process.

For more information or if you would like to attend, please contact Flóra Raffai, ■■■■■■■■■■■■■■■■■■■■■■ by Friday, 25th April.

The Human Induced Pluripotent Stem Cells Initiative (HipSci)

The Human Induced Pluripotent Stem Cells Initiative (part funded by the Wellcome Trust) is calling for proposals for Induced Pluripotent Stem (iPS) cells for Rare disease cases.

HipSci are seeking clinicians (or scientists with access to relevant patient cases) to provide samples from patients with inherited genetic diseases for the disease component of the HipSci project. More information here.

Kindness for Kids Health Care Award

The Health Care Award from Kindness for Kids aims to improve the condition of health care provision for children (0-16 years) with rare diseases. We are looking for interdisciplinary, innovative research projects which will help to improve the quality of life of those affected. The award is a maxim of 40,000 Euro. More information here.

Application for EUPATI patient training course open!

The EUPATI Expert Training Course is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them. The certificate course will be a mixture of online and face-to-face education modules over a 13-month period, beginning September 2014. Please click here for more information on the Expert Patient Training Course.

In addition to the application form, you will also find a detailed guide for applicants. Please note that the closing date for applications is 20 April 2014.

ABPI Patient and Carer Survey

The ABPI have commissioned surveys to look from the perspective of patients and carers at treatments. To take part and for more information please follow the links below:

Patient Survey: Patient perspectives of treatment including orphan medicines for those with rare diseases:

Carer Survey: Carer perspectives of treatment including orphan medicines for those with rare diseases:

The surveys close on 25 April.

Best wishes,

Farhana Ali

Executive Officer