Rare disease UK Newsletter

Dear Alan,
Today's newsletter includes:

Rare Disease Day

Thank you to everyone who supported our Rare Disease Day activities and to those of you who came to our parliamentary receptions to mark Rare Disease Day 2016.

A summary of the all events is available on our website, or you can view our Rare Disease Day Storify here.

If you couldn’t attend the Westminster event (or you just want to relive it) you can read the update here.

We also held a number of Twitter conversations across Britain, to find out more please follow the links below:

England – Ben Howlett MP
England - Dr Larissa Kerecuk, Rare Disease Lead for Birmingham Children’s Hospital
Wales – Dr Graham Shortland, Medical Director for Cardiff and Vale University Health Board and Chair of the Welsh Implementation Group
Wales - Marie James, parent of an adult affected by a rare disease and ambassador for the Tuberous Sclerosis Association
Scotland - Jamie Hepburn MSP

We are extremely grateful to all the patients, families and patient organisation representatives who have supported our Rare Disease Day 2016 campaign.

It's Genome Seq Week

Genome Seq Week 2016 is a week of events all about cancer genetics.

To celebrate the launch of Genetic Alliance UK's Patient Charter about genome sequencing in cancer, they are hosting talks, interviews and Twitter chats to find out more about how genetics and genomics could change the way we treat cancers.

Details of events throughout the week can be found here.

If you can’t be there in person, follow all the action on twitter @GeneticAll_UKand #GenSeqWk

Launch of Pledge for Patients campaign

The Scottish and Welsh devolved elections are fast approaching and last week, at our rare disease parliamentary receptions in Scotland and Wales, we launched Pledge for Patients 2016.

Many of you will already be aware of this campaign which ran last year during the General Election. This year is no different, in order to ensure those affected by rare, genetic or undiagnosed conditions get access to the right care and treatment we need the help of Assembly Members (AMs) and parliamentarians in Wales and Scotland. We are asking AMs and parliamentarians to sign up to pledges to help the patients in our community.

You can find out more about this work, and how to be involved, here.