Rare Disease UK - Monthly Update - January 2010

Dear RDUK member,

January was a very busy month at Rare Disease UK as we get ready for Rare Disease Day. Here are some of our activities.

Rare Disease Day 2010 – “Patients and Researchers – Partners for Life”

We are having a fantastic response from people wanting to attend the Rare Disease Day events in Scotland, Wales and Northern Ireland. Just as a reminder, these are taking place on the dates below:

Welsh Assembly – the Senedd, February 24th
Scottish Parliament – Holyrood, March 2nd
Northern Ireland Assembly – Stormont, March 4th

Please note these events are open only to those who have registered to attend so please contact us if you/ representatives from your organisation are interested in attending.

Contact campaign

As you know, we have started a contact campaign to encourage members and others with an interest in Rare Disease Day in Scotland, Wales and Northern Ireland to contact their elected representatives to inform them about Rare Disease Day and to ask them to attend the reception. More information and template letters are available by clicking here.

We will be launching the contact campaign to MPs in England in the next week or so – keep an eye on your email!

Case studies and press coverage

We are still working with a PR agency to try and place case studies and to gain media coverage nationally. We have also started working on local media coverage.

Again a big thank you to those of you who have come forward as case studies - we had many moving and inspirational stories and hopefully we will be able to generate as much awareness as possible.

We are looking for a specific case study – if you are/know of a father of a child with a rare condition who has done a great deal of work to raise awareness or fundraising for that condition we would be interested in hearing from you – stephen@raredisease.org.uk

Become a Friend of Rare Disease Day

Eurordis, the European Organisation for Rare Diseases, who are coordinating Rare Disease Day at an international level, are keen to encourage as many people as possible from around the world to become a "friend" of Rare Disease Day. A list of friends will be displayed on the Rare Disease Day website with the aim of demonstrating strong international support for aims of Rare Disease Day. If you as an individual or an organisation would like to sign up to become a friend please click here and fill in your details.

Rare Disease Day event in Belfast

I would like to draw your attention to an event which is being held by one of our members – the Cavan Tommy Hoey Trust at City Hall in Belfast on Friday the 26th February 12pm-1:30pm. Rare Disease UK will be attending the event to mark Rare Disease Day and Melissa Hillier will be speaking at the event.

For more information, please contact Terry Hoey at terryhoey@the-cavan-tommy-hoey-trust.org

Activities

Some of our activities this month included:

• We met with Dr Jackie McCall from the Northern Ireland Public Health Agency to discuss Rare Disease UK and issues around commissioning for rare diseases.
• We met with John Compton, Chief Executive of the Northern Ireland Health and Social Care Board who is keen on convening a meeting of the key figures in Northern Ireland to discuss rare disease policy.
• At Stormont we met with Jim Wells MLA, chair of the Health Committee in the Northern Ireland Assembly and Lord Browne MLA. Both are sponsoring the Rare Disease Day reception at the Assembly.
• Melissa spoke at the European Genetic Alliances Network meeting in Basel using Rare Disease UK as an example of how different groups of stakeholders can work together for a common cause.
• Whilst in Basel we visited mondoBIOTECH, a pharmaceutical company specialising in rare and neglected diseases, and their exhibition dedicated to rare diseases. We learnt new ways of promoting the message that collectively rare diseases are not rare.
• We met with the Progress Educational Trust to discuss rare disease policy and the work we have been doing.
• In Edinburgh we had a stall at the British Paediatric Neurology Association Annual Conference.

• We have also been working on responses to the Department of Health Consultation on the Innovation Pass Pilot (http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_109236) and the Department of Health Consultation on Strengthening Specialised Commissioning (http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_109923)

Surveys

We have been notified of some online surveys that you might be interested in participating in:

The Genetic Interest Group is continuing with its work into looking at the issues people with genetic conditions face in obtaining travel insurance. The PNH Alliance, who have recently joined RDUK (see below), are also taking up the issue and is conducting an inquiry into travel insurance. The aims of the inquiry are to:

•       Give a collective voice to patient experience in accessing travel insurance
•       Better understand the barriers to travel insurance from an industry perspective
•       Understand the government role in supporting the rare disease community in accessing travel insurance
•       Offer a political platform to raise issues of access to travel insurance
•       Make recommendations for improved access and possible government action

You can contribute to the enquiry by completing a short survey at:
www.surveymonkey.com/pnhalliancetravelinsuranceinquiry

Thanks to those of you who completed the survey into personalised healthcare technologies – “Health for All, Care for You”. The period to respond has been extended but will be closing shortly so please could you respond a.s.a.p.
It doesn't matter if you don't know the answer to some of the questions - there is a "don't know" option and the survey will only take around 10 minutes. What's important is that patient organisations are represented.

"Researchers at Karolinska Institutet in Stockholm, and Science|Business, a technology news service based in London and Brussels, are conducting a comprehensive opinion survey titled “Health for All, Care for You”. The aim is to gather the views of researchers, doctors, patient groups, industry officials, government regulators, and health insurers/payers in the UK, France, Belgium and the Netherlands.
Our goal is to examine attitudes towards personalised health care technologies and make a substantial contribution to the public debate over its costs, benefits and potential. You do not need to be an expert in the field to have a valuable opinion to contribute to this research. We very much appreciate your input. Please complete this online survey. It will take ten minutes of your time and your responses will be strictly confidential. Data from this research will be reported only in the aggregate.

You can participate in the survey at:
http://surveys.verticalresponse.com/a/show/579456/89511d316d/0

New Members

We are delighted to welcome 6 new organisations:

UK Mastocytosis Support Group – The Group brings together information for people with the condition and their carers. The 3 main aims are: to offer support, to encourage understanding and to inform both medical professionals and individuals of the condition.

Alpha1 UK Support Group – The Group aims to support and offer advice to those with Alpha1 Antitrypsin deficiency and their families. It also aims to promote the interests of Alphas in the UK.

Hypermobility Syndrome Support Association - The HMSA aims to provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large.

Bradnet - Bradnet (Formerly known as Asian Disability Network) is a user-led organisation that seeks to empower and enable disabled people to lead their chosen lifestyle by providing appropriate services such as:
• person-centred outreach and advocacy
• one-to-one support and welfare rights advice
• help in education and employment

Progress Educational Trust - Progress Educational Trust, established in 1992, is a small UK charity that believes that balanced public and professional debate on reproductive and genetic issues is crucial. It provides accessible information to the public through BioNews; publications, debates and conferences on the social, legal and ethical implications of these fast-moving areas.

PNH Alliance (Paroxysmal Nocturnal Haemoglobinuria) - Following the Government's decision to nationally commission services in England for the treatment and management of the ultra-orphan disease Paroxysmal Nocturnal Haemoglobinuria (PNH), the PNH Alliance has been established to ensure PNH services continue to improve patient outcomes and to profile the issues surrounding PNH and other ultra orphan diseases.

Thank you for your continued support and we hope to see some of you at our Rare Disease Day events.

Best wishes,
Stephen Nutt

stephen@raredisease.org.uk 020 7704 3141