Rare Disease UK Newsletter

Today's newsletter includes:

Patient Experience Survey

We are launching our survey into patient experiences of rare disease!

Anyone who has, or cares for someone with, a rare or undiagnosed condition can take the survey. We hope this survey will help us get a full, up-to-date picture of the experiences of rare disease patients.

This survey follows on from a survey that we carried out in 2010, the report from the 2010 survey has been invaluable in the influencing and campaigning work that we do. We intend that the report from this year’s survey will serve the same purpose in supporting the work of RDUK, Genetic Alliance UK, SWAN UK and our members.

Please take the survey yourself and/or share the link with your networks - we hope to get as many responses as possible!


RDUK blog

We have posted two new blogs since the last newsletter - don't forget to have a quick read!
  • Kristy's story: HTLV-1 "The whole experience was positive and almost overwhelming, as I suddenly found myself among 150 friends, and people who understood my disease and wanted to help."
  • One in a million - Cyclical Neutropenia "When someone tells you that you’re one in a million, it’s usually a good thing...unless it’s a doctor diagnosing you with the rare blood disorder Cyclical Neutropenia. This happened to me one afternoon in July 1998 and my life changed forever."

Would you like to blog for us?

We're looking for people to blog about their experiences of rare disease, so if you, or one of your members are interested please get in touch:

All Party Parliamentary Group on rare, genetic and undiagnosed conditions

We'd like to say a big thank you to those of you who have already sent a letter to your MP and/or have shared the request with your members (but don't forget to let us know when you recieve a response!).

It's not too late to send a letter - for a successful APPG we need as many MPs actively engaged as possible!

You can find out further information about the APPG here - or download the template letter.

The Accelerated Access Review

The Accelerated Access Review (AAR) has launched an engagement platform to help patient groups get involved in the review - click on the picture to take a look.

Many in our community are frustrated by issues around access to rare disease treatments and interventions. For this reason, our parent organisation, Genetic Alliance UK will be contributing to the review – our Director, Alastair Kent OBE, is on the expert advisory group – and we think that our members should be engaging in the process too.

It’s important that we keep the pressure on and make sure patient voice is listened to within the Accelerated Access Review.
Ways to get involved:
  • The engagement platform, where the AAR team are seeking views on various issues. This closes on 11th September.
  • Case studies – last week they launched a template for these. The deadline for this is Monday 7th September at 5pm
  • The AAR team are also asking for views to determine some principles for the relationship between patients and innovation/health services. You can give your views on this here.
If you have any questions/issues you can contact the team by clicking here.

Collective Intelligence in Patient Organisations report

Nesta have been examining how patient organisations use, generate and share information in our complex, data-rich healthcare system. Their new report explores examples of innovative patient organisations: it examines their ambitious research programmes, how they share skills and release the energy and expertise of patients. It also investigates the challenges that patient groups face, and it calls for more support for patient organisations to extend this critical work.

You can download the report here.

Antenatal Results and Choices conference

What: ARC are holding a conference looking at Screening Expectations: The impact on women and professionals of advances in antenatal screening.
When: Monday, 21 September 2015
Where: The Hallam Conference Centre, 44 Hallam Street, London, W1 W6JJ

Click here for more details.

Patient Advocacy Leadership (PAL) Awards

Genzyme has launched the fifth annual Patient Advocacy Leadership (PAL) Awards programme for charitable organisations that serve the lysosomal storage disorder (LSD) patient community. The program is open to all non-profit organisations that serve the lysosomal storage disorder (LSD) patient community and designed to support disease awareness programs and patient support initiatives around the world.

You can find out more in their press release here.

News from Wales

Rare Disease Patient Network
The rare disease patient network will formally launch on 20th October 2015 at the Hub, Cardiff Bay. Please join us and inform your members aware of the opportunity to come along to the event to learn more about the network and our campaigning work in Wales, and hear from eminent speakers in the field of rare disease.

An agenda will be circulated in due course, in the meantime you can contact our Development Officer in Wales, Emma for more details.
Other upcoming events supported by Genetic Alliance UK in Wales:
  • Event on stratified medicine taking place at the Welsh Assembly on Tuesday, 29 September
  • Movement Disorders Study Day for patients, patient organisations and clinicians on Monday, 9 November

Please contact Emma if you would like to be part of any of these upcoming events.

News from Scotland

National Museums of Scotland Workshops
Where: The Museum of Scotland, Chamber Street, Edinburgh
When: Wednesday 19th August (2pm – 4pm) and Thursday 20th August (10am – 12pm)

The National Museums of Scotland, working with Genetic Alliance UK, are keen to hear from patient groups, patients, families and carers as part of their work in developing six new science galleries in the National Museum of Scotland. They are holding focus group workshops which representatives of patient groups are invited to attend.

You can register for both events via Eventbrite, using the links above.
National Museums of Scotland Survey
In addition to the workshops, an online survey has been developed for patients, families and carers. This is a unique opportunity for those affected by genetic conditions to have a say in the development of a museum exhibition and National Museums Scotland are keen to hear experiences of those living with a genetic condition. Please circulate and share the link to the survey with your members.
Welfare Reform Committee
The Scottish Parliament Welfare Reform Committee is currently looking at the practical implementation of the social security schemes outlined in the Smith Agreement.

The Committee is inviting all interested individuals and organisations to submit written evidence on the Smith Agreement and how the Scottish Parliament can use the proposed devolved powers to better deliver benefits in Scotland.

Further information, including details on how to respond, can be found here.

The Scottish Medicines Consortium Committee meeting
Louise, has written an update on the Scottish Medicines Consortium (SMC) committee meeting that she attended last week.