Tania's note: We're delighted to introduce Genetic Alliance UK as our new columnist for rare disease, genetic and undiagnosed conditions.
Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. It's an alliance of over 180 patient organisations – including SNJ. Genetic Alliance UK has two long-running initiatives; Rare Disease UK and SWAN UK. I am also a Trustee of GAUK. Rare Disease UK is a campaign to implement the UK Strategy for Rare Diseases, and SWAN (Syndromes Without a Name) UK is an initiative supporting families with children with undiagnosed conditions.
There will be a range of writers of our Genetic Alliance UK column, depending on the story. This week, Emily Muir, Policy and Public Affairs Assistant Here, talks about their efforts to set up an All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions and why they want your help.
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Emily Muir: We are delighted to have a new column on SNJ and hope to provide you with interesting and informative posts about rare, genetic & undiagnosed conditions. Genetic Alliance UK is setting up an All Party Parliamentary Group on rare, genetic and undiagnosed conditions. We are working together with SWAN UK Rare Disease UK, our members, and the wider rare, genetic & undiagnosed communities to launch the group.
All Party Parliamentary Groups (APPGs) are informal, cross-party groups of MPs and Peers interested in a particular issue. APPGs are not funded by parliament and do not have any power to make laws. They can however, be extremely effective in raising the profile of a particular issues and acting as a pressure group within government.
There are lots of APPGs covering everything from global health to beer and there are a number of highly successful disease/condition specific APPGs. As issues around rare diseases and genetics are increasingly being put in the spotlight by politicians, the media, and patient advocates alike, we believe that now is the perfect time for an APPG on rare, genetic and undiagnosed conditions to be formed.
At first glance it might seem like quite a broad ‘subject’ for an APPG to focus on, but in Genetic Alliance UK’s 25 years of existence we have tried to reveal, and raise awareness of, the huge number of similarities in the experiences, and inequalities faced by, individuals with rare, genetic and undiagnosed conditions. Since 80% of rare diseases have a genetic component and most genetic conditions are rare - these ‘similarities’ are often one and the same. They include: difficulties around diagnosis care coordination and insufficient information provision. A group that highlights this, and promotes the need for overarching improvements to the patient experience, will benefit all families and individuals with rare, genetic and undiagnosed conditions.
Providing a united voice in parliament should open doors, enabling us to push for change in the areas that matter most to our patient communities – the individuals and families affected by rare, genetic and undiagnosed conditions. It will ensure that MPs and peers are kept up to date with the issues that you face, and provide information about the actions the government can take to improve the lives of those living with undiagnosed, rare and genetic conditions.
However, since APPGs are groups run by MPs and Peers, for MPs and Peers, an APPG will not exist unless the MPs and Lords themselves understand the importance of the issues faced by individuals with rare, genetic and undiagnosed conditions and just how many people in their constituency are affected by these conditions.
That is why we are running a contact campaign asking our members – and the wider communities – to write to their local MPs, explaining why the issues are so important and why MPs should spare the time to join the APPG and attend meetings.
Will you help us by writing to your MP? We’ve drafted template letters to make the process as quick and simple as possible but we know from experience that the more you adapt and personalise these the more likely your MP is to respond positively as they are notoriously busy people. Unfortunately there are certain MPs who are not allowed to join APPGs (e.g. if they are also a minister or party whip - check out our FAQ on the APPG for more information on this).
Helping the Government understand what it can do to help improve the lives of families and patients is so important. During our contact campaign it has been wonderful to see so many patients and families take the time to ask us questions about the group and to write to their MPs asking them to get involved. So please do take the time to write to your MP and if you have any questions please don’t hesitate to get in contact with me, Emily at emily.muir@geneticalliance.org.uk or 020 7704 3141.
You can find out more:
- About the APPG: http://www.raredisease.org.uk/appg.htm
- FAQ on the APPG: http://undiagnosed.org.uk/archives/7405
Have you participated? Let us know in the comments or leave messages for Emily about the APPG.
Is your family living with a child with a rare disease? Tell us your story.
- Rare Disease Day: Hear our voice to help meet our needs - February 26, 2016
- The Rare Reality: An insight into the patient and family experience of living with a rare disease - January 21, 2016
- The mum whose photography project is focusing on children with rare disease - November 20, 2015
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