RDUK press release: Reminder: Your input needed on recommendations to develop a strategy for rare diseases
Rare Disease UK have issued a press release as a reminder of the need for recommendations on a strategy for rare diseases. Please find the press release below:
Reminder: Your input needed on recommendations to develop a strategy for rare diseases
Deadline 29th October
Thank you to all those who have responded to the Rare Disease UK consultation paper so far. We want as many people as possible to respond. The more responses we receive, the more evidence we can gather, the more informed the recommendations will be and the more weight they will carry. Even if you just respond to say you agree with the recommendations, please do!
Background:
For the past year Rare Disease UK, with the guidance of our five Working Groups, has been working on a report to develop recommendations on what should be included in a strategy for rare diseases. The final report will be launched to coincide with Rare Disease Day 2011 on February 28th.
We want your feedback on our findings so far and your evidence detailing your own valuable experience to inform the final report.
The health departments of the four UK home nations have all signalled their willingness to take our findings into consideration when developing a strategy for rare diseases. Your input could help shape this vital strategy.
You can download the consultation document outlining our findings so far here. This document offers an overview of the initial recommendations of the Working Groups and it is aimed at stimulating further input.
We would appreciate contributions from all interested parties. That includes patients and family members, clinicians, researchers, academics, industry members, and any other groups interested in or affected by rare diseases.
Please feel free to distribute the consultation document to anyone who may have an interest in responding.
Download the consultation document (pdf)
Responses are requested by Friday 29th October 2010 in order to allow time for production of a final report by Rare Disease Day 2011.
Please send your responses to Lauren Limb either by email: lauren@raredisease.org.uk, or post:
Rare Disease UK,
Unit 4D Leroy House,
436 Essex Road,
London,
N1 3QP.
We look forward to your responses.
Best wishes,
Stephen Nutt
RDUK Secretariat