LAUNCH OF NEW RESEARCH PROJECT ON RARE DISEASE AND MENTAL HEALTH
Today we are launching a new research project looking at the emotional impact of living with a rare or undiagnosed condition and its effect on mental health.
Living with a rare or undiagnosed condition can have a huge impact on patients and families. However, our recent patient experience report showed that many individuals are not getting the support they need. This new study will involve being interviewed by phone about your experience of living with a rare or undiagnosed condition, or having a child with a rare or undiagnosed condition.
For more information about this project and to find out how you can get involved, click here.
CHILDREN AND YOUNG PEOPLE’S EXPERIENCES OF RARE DISEASE
We want to ensure that everyone affected by a rare, genetic or undiagnosed condition, no matter their age, has a voice where it matters. That’s why we’re launching a new project to find out more about children and young people’s experiences of living with a condition, as told by them.
For more information about this project, and to find out how patients you work with can get involved, click here. We will be holding our first engagement session at Birmingham Children’s Hospital’s Marvellous Superstar Summer Party (see below for more information).
WHO SHOULD OVERSEE RARE DISEASE UK?
Rare Disease UK’s Management Committee elections are now open! Thank you to everyone who nominated themselves for a role.
The Rare Disease UK Management Committee meets four times a year to oversee the Rare Disease UK campaign. It is currently chaired by Alastair Kent OBE.
All our supporters are invited to vote for our new Patient Representative, Policy Representative and Industry Representative. Click here to vote for who you think should oversee our campaign. Voting will close on Monday 24 July.
REGISTRATION OPEN FOR GENETIC ALLIANCE UK’S 2017 ANNUAL CONFERENCE
Genetic Alliance UK, the charity that runs Rare Disease UK, has opened registration for its 2017 Annual Conference. This year’s annual conference will focus on upskilling members of Genetic Alliance UK and the wider patient community, sharing success stories and promoting collaboration among members. After our Annual General Meeting, there will be keynote speakers, workshops and an interactive session.
The conference is open to Genetic Alliance UK members, non-members, researchers, clinicians and industry representatives. For more information, and to register, click here.
JOIN OUR TEAM!
The Genetic Alliance UK and Rare Disease UK team is recruiting! We are looking for a Communications Officer and a Public Affairs Assistant to join our hardworking and friendly office. Click on the links above for more information about the roles.
BECOME A TRUSTEE OF GENETIC ALLIANCE UK
Genetic Alliance UK is seeking to appoint up to five new trustees, including a Chair, Deputy Chair and Treasurer. The Board of Trustees is made up of representatives from Genetic Alliance UK’s membership. It aims to have a broad range of experiences on the Board, including people directly affected by a genetic condition, carers and family members as well as those working in a professional capacity at one of its member organisations.
For more information about these roles, and to download the Trustee recruitment pack, click here.
CAMBRIDGE RARE DISEASE NETWORK PATIENT JOURNEY POSTERS
Monday 11 September
Cambridge Rare Disease Network (CRDN) will be holding their annual Rare Disease Summit on Monday 23 October 2017. As part of the Summit, CRDN are inviting rare disease patient groups and patients to share their patient journey in the form of a poster.
Posters will be circulated amongst industry, clinicians and trusts, and will be a great way to help raise awareness of your condition. You can find more details about what to put in your poster here.
OUR HUMAN CONDITION
Award winning photographer Paul Wenham-Clarke’s new photography project will explore the relationships of siblings when a genetic condition runs in their family through photography and audio interviews.
Help raise awareness of your condition and have some beautiful pictures taken of your children, or you and your siblings by joining the project. You can contact Paul on the project’s Facebook page here.
MARVELLOUS SUPERSTAR SUMMER PARTY
Saturday 22 July 2017, 10am-3pm
Uffculme Centre, Queensbridge Road, Moseley, Birmingham. B13 QQY
It is almost time for Birmingham Children’s Hospital’s Marvellous Superstar Summer Party! We are excited to join SWAN UK and Roald Dahl’s Marvellous Children’s Charity for this event, where we will be hosting our first activities session for our new children and young people’s patient experiences project.
For more information, and to register, please call 0121 333 9227 or e-mail ■■■■■■■■■■■■■■■■■■■■■■■■■.
DYLAN’S STORY: OUR LITTLE PUZZLE
Dylan’s family shared their story of living with an undiagnosed genetic condition over on our blog.