EVENTS: Climb Annual Conference, October 2017

Over 150 patients, families and professionals attended the latest Climb Annual Conference which took place on Saturday 14th October 2017 in Birmingham.  Our conferences are a way for us to engage key professionals and partners to share with us the latest developments in the world of Inherited Metabolic Disorders,  as well as providing the opportunity to hear your stories and experiences, and identify how we can best help to improve outcomes for patients.  We were delighted to welcome so many people, not only from all corners of the UK, but also from Cyprus and China!

The conference is always a highlight of our calendar, but this one was particularly important as we were able to share our new strategy and plans for the coming years.  The agenda was packed with information on the latest developments in areas such as Newborn Screening and Patient Access to Treatments, as well as disease-specific breakout sessions and focus groups for young people, HPP families, UCD families and FOD families.

The main conference was introduced by Climb’s Chair, Nigel Eaton and Chief Executive, Lindsay Weaver, and we welcomed a number of professional speakers, who discussed a wide range of topics such as:

  • Developments in the UK Newborn Screening programme
  • An overview of gaining access to medicines
  • The 100,000 Genomes project

We were also fortunate enough to hear from a number of patients and families, who shared their personal experiences, from coping with a positive Newborn Screening test, to going through transition and living independently, as well as fundraising and raising awareness.  Hearing these stories first hand from the patients and families is very inspirational and emotional.

Feedback following the conference was very positive.  We asked attendees for their feedback on the areas we are going to be focusing on at a strategic level, and what they would like to see happen in these areas:

Early Diagnosis
“More diseases screened for at birth”
“Consistent availability of screening and diagnosis – not being discouraged by health professionals”
“Genetic correction at pre-conception stage”

Patient Access
“Specific updates by disease on developments, treatments and research progress”
“Widened access for patients”

Young People
“Helping them to accept, manage and move forward with their diagnosis/condition”
“Better transition services”
“Help with addressing p
sychological impact of having an IMD”

Information
“More information specific to professionals”
“Up to date information on all diseases”
“Information for schools and caregivers”

Core Support Services
“More opportunities for me to meet other families”
As care is becoming more centralises, the need for information and patient support will fall to patient groups”
“Support with explaining conditions to other health professionals”

Our thanks to all of our speakers who generously contributed their time and expertise to help deliver an insightful and valuable conference.  Presentations from the speakers can be found here:

Developing the Newborn Screening Programme and App Update – Professor Jim Bonham

The 100,000 Genomes Project – Dr Richard Scott

Access to Treatments – Josie Godfrey

Access to Treatments, the Industry Experience – Paul Connor, Kyowa Kirin

Transition, and Transition with Disabilities – Briony McNelly, Salford Transition Team 

The AmBeR Project, BreathDX

Developing Gene Therapy for OTC – Dr Julien Baruteau

Many thanks to our Sponsors who helped to make this event possible: