Info, / Update via RareDisease UK

In this update:
  1. NHS England engagement meeting with patient groups
  2. Update on Rare Disease Day
  3. Cambridge Rare Disease Network: Event
  4. Connective Tissue Disorders: Event

NHS England engagement meeting with patient groups on the prioritisation process for specialised commissioning - sign up to have your say!

When: 2:00pm - 4:00pm, 23 March
Where: Wellington House, 133-155 Waterloo Road, London SE1 8UG

Our parent charity, Genetic Alliance UK, has arranged an engagement meeting specifically for patient group members to meet with James Palmer's team, the Medical Director at NHS England, to discuss the Specialised Commissioning Prioritisation consultation. The consultation document can be found here.

There are only 15 places left at this workshop. We therefore ask that you only register one representative from your organisation. Places will be assigned on a first-come first-served basis. All places will be confirmed by close of play on Friday 20 March.

To register your interest in attending, please email Louisa, at Genetic Alliance UK.

Update on Rare Disease Day

Edinburgh, Scotland
To mark Rare Disease Day, Rare Disease UK (RDUK) held three events across the UK. The first event on Tuesday 24 February was held in the Scottish Parliament and hosted by Malcolm Chisholm MSP. Keynote speaker Shona Robison, Cabinet Secretary for Health, Wellbeing and Sport, noted that Scotland was at the “forefront of implementing the UK Strategy for Rare Diseases.”

Westminster, England
Our second parliamentary reception was held in Westminster the following day and was attended by over 150 people, including 35 MPs and Peers. For the third time Liz Kendall MP, Shadow Minister for Care and Older People, hosted the event. Ms Kendall confirmed that Labour is "absolutely committed to continuing, developing and implementing the UK Strategy for Rare Diseases.” Earl Howe, the minister in charge of Rare Diseases, described the event as “one of the landmark events of his year” and emphasised his commitment to making the UK a world leader in patient-centred research into rare diseases.

The reception in Westminster also saw the launch of two short films, put together by Health Education England, one aimed at patients and their families and another aimed at healthcare professionals. You can watch them here.

Cardiff, Wales
Our third and final reception took place at the Welsh Assembly on Tuesday 3 March and was hosted by Darren Millar AM. The Deputy Minister for Health, Vaughan Gething AM, launched the Welsh Rare Disease Plan which sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live and whatever their circumstances. The plan details what actions health boards, NHS trusts and their partners in local government, the third sector, education and research and industry can take together to engage and co-ordinate specialised services, which may operate only at regional, national or even international level. Read the plan here.

The Northern Ireland Rare Disease Partnership also marked Rare Disease Day and World Birth Defects Day on Tuesday 3 March through a joint conference. Find out more here.

Read the full update on Rare Disease Day here.

News from our members

Cambridge Rare Disease Network: Event

The Cambridge Rare Disease Network (CRDN) will be launching on 2 April; it is a non-profit organisation aiming to create rare disease awareness and build a community within the Cambridge area.

The CRDN will be holding a launch event called 'Parent Entrepreneurship in Rare Diseases' details below:

When: 5:00pm- 8:00pm, Thursday 2 April
Where: Cambridge Judge Business School

Keynote speakers include:
· Dr Nick Sireau, Founder of the AKU Society and the charity Findacure;
· Ms Kay Parkinson, Founder of patient group Alstrom Syndrome Society;
· Dr Will Evans, Trustee of the Niemann-Pick Disease Group,
· Dr Cesare Spadoni, Founder of aPODD Foundation.

Follow this link to register.
More information here.

Northern Ireland Rare Disease Partnership: Event on Connective Tissue Disorders.

The Northern Ireland Rare Disease Partnership, with support from the Research and Development Division of the Public Health Agency, and in collaboration with the Regional Medical Genetics Service and QUAMS, are bringing two external, internationally recognised experts on Connective Tissue disorders and translational genomic medicine, to join with local experts in a “mini Symposium”, chaired by Professor Patrick Morrison, on connective tissue disorders.

When: 6:00pm to 9:00pm, 24 March 2015
Where: Lecture Theatre, Medical Biology Centre, Queen’s University Belfast, Lisburn Road, Belfast

Follow this link to register.
More information here.