RareDisease UK newsletter

Today's newsletter includes:

Rare Disease Patient Experience Survey
- less than a week left to complete

The survey into patient experiences of rare (including genetic) and undiagnosed conditions closes on the 28th September (next Monday).

We are really pleased that we've already had over 1000 responses, but we want to hear from as many patients, with the widest range of diseases/conditions as possible to help get a full, up-to-date picture of the experiences of rare disease patients.

Anyone who has, or cares for someone with, these conditions can fill in the survey. It is hoped that the results from the survey will be invaluable to our, and our members, future campaigning & influencing work.


APPG on rare genetic and undiagnosed conditions

Momentum is building behind the proposed All Party Parliamentary Group on rare, genetic and undiagnosed conditions. Many of you have taken the opportunity to write to your MP and as a result the number of MPs and Lords who have expressed an interest in the group is growing every day. Some members of SWAN UK (our sister initiative) have even blogged their letters openly to help increase awareness.

These letters state more eloquently and insightfully than we ever could why the APPG needs to exist, and why it’s work will be fundamentally important to individuals with rare, genetic and undiagnosed conditions.

To read them click here.

It’s not too late to ask your members to write to their MP: traditionally, as an open letter, or both. They can adapt our template or write their own, just remember to ask them to let us know what the response is!

Rare Disease Day 2016 theme and slogan

The European Organisation for Rare Disease (EURORDIS) has announced that the 2016 Rare Disease Day theme and slogan.
Theme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

Rare Disease Day this year falls on Monday, 29 February 2016 (the rarest day of the year).

Keep an eye out for more information on events we're planning around the country.

EURORDIS (European Organisation for Rare Diseases) Awards 2016: Nominations open

Deadline for nominations: 31 October, 2015.

You can nominate an individual, patient organisation or company that you feel deserves recognition of their dedication and hard work in one of eight categories.
Click here to see the categories and find out how to submit your nomination.

Rare Disease Welsh Patient Network Launch

When: 10am – 3.30pm, Tuesday 20 October, 2015
Where: Life Sciences Hub Wales, 3 Assembly Square, Cardiff, CF10 4PL

You can now register to join us at the Welsh Patient Network launch!

The keynote speech will be given by Professor Chris Oliver from Birmingham University who has experience as a researcher in rare and genetic conditions particularly in relation to genetic syndromes associated with developmental delay.

We will also be covering topics such as an introduction to clinical trials, new sequencing technologies and what they mean for patients with rare conditions and we will hear from patients and carers about their experiences of living with rare conditions.

Cross Party Group on Rare Diseases - help us increase our MSP membership

With the Scottish Parliamentary election in May getting closer, we need your help in securing the membership of our Cross Party Group for Rare Diseases for 2016.

Click here to read Natalie’s update on what we’ll be up to in the months before the election, and about how you can help us maintain the impact of the CPG for Rare Diseases into the next parliament.


NIHR Great Ormond Street Hospital Biomedical Research Centre Open Day

When 12pm to 4pm, Saturday 24 October 2015
Where: UCL, Institute of Child Health

This day is aimed at children, young people and families. The afternoon will involve a variety of events, including hands-on activities, seminars and lab tours.

More information can be found here.

Wolfram Syndrome Conference

When: Saturday 24th October 2015
Where: Whittlebury Hall, Towcester
The Wolfram Syndrome Conference is organised by WellChild and Wolfram Syndrome UK, and is an opportunity for parents, professionals and adults with Wolfram Syndrome to find out more about the condition, talk to experts and hear about the latest research.

Click here for more information and for a booking form.

World MSA (Multiple System Atrophy) Day

The 3rd October is World MSA (Multiple System Atrophy)

The MSA Trust are asking people to show their support on World MSA Day 03 October 2015 and host a tea party.