Asfotase alfa (Strensiq) Managed Access Agreement for treating Hypophosphatasia

 From August 2017, children and adults with a rare inherited metabolic bone disease called Hypophosphatasia (HPP) have been able to access a potentially life-enhancing drug called asfotase alfa (Strensiq). The drug asfotase alfa was previously only recommended for use in babies by NICE in draft guidance, as evidence showed it could be life-saving. The Managed […]

Metabolic Support UK attend meeting for the integration of specialised services in hospitals

Yesterday, our Chief Executive, Lindsay Weaver, attended the Specialised Healthcare Alliance quarterly meeting to hear Jon Stewart, Director of Specialised Commissioning, talk about plans to integrate more specialised services at a local level and potential changes to the Clinical Reference Groups. Hear Lindsay’s thoughts on how these changes might impact patients and how Metabolic Support […]

Ravicti now available for patients with Urea Cycle Disorders

NHS England and the Scottish Medicines Consortium agree to reimburse Ravicti® (glycerol phenylbutyrate) for the management of Urea Cycle Disorders (UCDs) Ravicti is the first liquid formulation of phenylbutyrate, which is virtually tasteless and odourless.  This treatment, a more palatable alternative to sodium phenylbutyrate will be provided via specialised metabolic commissioning centres across England and Scotland for the long-term management Urea […]

Metabolic Support UK; the new name for Climb!

Introducing Metabolic Support UK (formally known as Climb) As you may know, we have been working hard over the past year, listening and reviewing all of the services that we offer and strengthening our understanding of the key issues for patients living with Inherited Metabolic Disorders (IMDs), and their families, today. This consultation, including several […]

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 […]

Climb Annual Conference, 14th Oct – Book Now!

We are pleased to confirm the itinerary for the Climb Annual Conference on 14th October 2017 at the Macdonald Burlington Hotel in Birmingham. It’s going to be an informative day with plenty of opportunities to meet and get to know other families, hear from a range of speakers and help us to shape our services […]

Team Climb take on the streets of London on two wheels

A huge thank you to our 7 Team Climb cyclists Marc Wittenberg, Kevin Hancox, Kate Jenkins, Emily Cullum, Jade Devonshire, Andy Law and Jaq Pearce who took part in the RideLondon 46/100 event on 30th July 2017.  Not only did they take on this fantastic challenge for Climb, but together they raised over £4,700! The […]

Charlie Gard

After hearing the latest news on this case, Charlie and his parents are in the thoughts of everyone at Climb. Our thoughts also go out to all those involved in the care of Charlie. Climb exists to raise awareness of Inherited Metabolic Diseases including Mitochondrial Disease. It is important that we continue to collaborate with […]

The Catwalk comes to Nantwich for Climb

M&Co in Nantwich held a fantastic fashion show in aid of Climb on Wednesday 5th July, which was attended by over 50 people including the Mayor of Crewe, Cllr Diane Yates. Models, including staff, customers and their families and friends from the local community (and our very own founder, Lesley Greene) took a turn on […]

NEWS: Final NICE decision for Strensiq in the treatment of hypophosphatasia

July 2017 – After a 2 year process Climb is pleased that NICE has published draft guidance recommending the drug Strensiq (also known asfotase alfa) for people with paediatric-onset hypophosphatasia.   The funding agreement between NHS England and Alexion Pharma is based on a 5-year Managed Access Agreement which means that patients with pediatric onset hypophosphatasia […]

XLH in the spotlight for Climb’s Patient and Family Day

100 patients, families and professionals came together on Saturday 1st July to discuss the latest developments in X-Linked Hypophosphatemia at a special event hosted by Climb in collaboration with Central Manchester Healthcare Trust. XLH – X-Linked Hypophosphatemia – is a genetic disorder that affects about one in 20,000 people. Typically, it is passed from one […]

XLH Patient and Family Day – Saturday 1st July 2017

This event is now fully booked X-Linked Hypophosphataemia (XLH) Patient and Family Meeting Climb in collaboration with Central Manchester Healthcare Trust Radisson Blu Airport Hotel (Manchester) Saturday 1st July 2017 9am to 4pm A unique and exciting event, packed with speakers discussing the latest innovations in XLH, along with opportunities to network with other families. […]

The 100,000 Genomes Project

About the 100,000 Genomes Project The project aims to sequence 100,000 whole genomes from about 70,000 people.  Participants are NHS patients with certain types of cancer and patients with rare diseases plus their families. With their consent their genomes will be sequenced and linked to details about an individual’s medical condition.  Doing this may help […]

Climb receives the support of new Mayor of Crewe

 On Thursday 11th May 2017, we were honoured to attend the Mayor Making Ceremony at South Cheshire College to watch Councillor Diane Yates receive the Chains of Office and Civic Insignia, becoming the fifth Mayor of Crewe. With an interest in supporting homegrown charities, and improving the lives of children, Cllr Yates attended Climb’s Open […]

Rare Diseases and the General Election

The Department of Health and NHS England recently made a commitment to develop an implementation plan for the UK Strategy for Rare Diseases in England, which is a really positive outcome for those affected by Inherited Metabolic Disorders. With the General Election taking place on 8th June, we want to make sure that your voices and needs […]

Meet Team Climb 2017 – London Marathon Runners

Our exceptional runners have kindly shared their individual stories of why they took part in this extraordinary event for Climb. We would like to thank Team Climb for all of their massive fundraising efforts, hard work and enthusiasm! Jessica’s Story “I ran the 2016 London Marathon for Climb and absolutely loved the atmosphere and seeing the dedication […]

NEWS: Government announces implementation plan for the UK Strategy for Rare Diseases

The Minister of State for Health, Philip Dunne MP, has announced that NHS England will develop an implementation plan by the end of the year for the commitments outlined in the UK Strategy for Rare Diseases. For those affected by Inherited Metabolic Disorders in England this is a fantastic result and ensures that the Government will […]

EVENTS: Guests had a Ball at our Las Vegas Fundraiser!

The glitz and glamour of Las Vegas came to Crewe Hall Cheshire in Cheshire on Saturday 25th February 2017, for the inaugural fundraising charity ball of the Rotary Club of Bentley Cheshire in aid of Climb and Young Minds. The evening began with a drinks reception, the bubbles and laughter flowed! Everyone really embraced the red and black […]

An Update on Mitochondrial Donation

An Update on Mitochondrial Donation – Dr Lindsey Butterworth March 2017 Everything we do requires energy. Whether we are walking the dog, running to catch a bus or sitting reading this article, the cells in our body constantly need energy to work and stay alive. Nearly all our cells contain small structures known as mitochondria, […]

NEWS: Climb and The Brittle Bone Society submit appeal on final NICE decision for HPP

Climb has appealed the NICE Review Committee decision not to approve the treatment of severely affected juvenile and adult patients with the treatment asfotase alpha.   Whilst Climb is extremely pleased that the treatment will be available for all perinatal and infantile cases of the disorder under the Managed Access Agreement criteria, they are disappointment […]

FUNDRAISING: John Vs Mountain

John MacDonald has undertaken some amazing challenges for Climb this year! On 3rd September, John tackled the Man vs Mountain event: a 22 mile race from Caernarfon Castle to the summit of Snowdon with a series of punishing obstacles in Dinorwic Quarry thrown in for a cool down!  In preparation for this mighty challenge, John […]

EVENTS: Families and professionals come together to discuss transition

Over 100 people attended the latest Climb conference; Transition and Adult Care, which took place on Saturday 8th October 2016 at The Studio, Birmingham. We understand that the transition from paediatric to adult care is a worrying time for patients and their families, so we developed a full programme to open discussions and help make this […]

NEWS: NICE to recommend new drug for children with perinatal and infantile-onset HPP

NICE has published draft guidance recommending the drug asfotase alfa for children with perinatal- and infantile-onset hypophosphatasia (HPP) – a very rare inherited condition affecting between one and seven babies each year in England. The full draft guidance can be accessed here.  In summary: Asfotase alfa is recommended as an option for treating the bone manifestations […]

EVENTS: Las Vegas Charity Ball, Crewe Hall – 25th February 2017

We are delighted to announce the Las Vegas Charity Ball, at Crewe Hall Cheshire on Saturday 25th February 2017! This exciting charity ball is being organised and hosted by the Rotary Club of Bentley Cheshire; a Satellite club of Crewe & Nantwich Weaver Rotary, which was inaugurated in July 2016. The Rotary Club of Bentley Cheshire […]

Climb founders Lesley and Peter Greene, with Penny Lewis and Glenys from M&Co Nantwich

EVENTS: M&Co Models Strike a Pose for Climb

Over 50 people attended a charity fashion show at M&Co on High Street Nantwich on Thursday 15th September, which raised more than £400 for Climb. Models, including staff, customers and their families and friends from the local community, took a turn on the catwalk, showcasing the latest seasonal fashions from the ladies, men’s and children’s […]

X Factor's Rebekah Ryan

NEWS: X Factor contestant hopes to CLIMB the charts with charity record

Saturday night favourite the X Factor hit our screens at the weekend, and one singer hoping for the much coveted ‘four yeses’ was  Rebekah Ryan from Tamworth who tragically lost her son when he was just three years old. Rebekah opened up to the judges about the heartbreaking loss of her first son Ethan, who sadly passed away after suffering […]

NEWS: Golden Bond places available for 2017 events

Have you been inspired by the Olympics and fancy taking on an amazing challenge?  Applications are now open for Golden Bond places for two fantastic events in 2017! Virgin Money London Marathon – 23rd April 2017 Think 26.2 miles of iconic London landmarks, cheering crowds, an electric atmosphere, team camaraderie, fabulous support from Climb HQ […]

Climb seeks MCADD families for new Focus Group

MCADD families belong to what is now, by far, our largest group of families. Since the addition of MCADD to the screening programme in 2010, the number of MCADD families has increased and over time so has the need for a more varied spectrum of support. In order to ensure that we are providing services […]

AWARENESS: Over 360 #metabolicselfies shared for Metabolic Disease Awareness Week

To celebrate Metabolic Disease Awareness Week, supporters of Climb took over social media, with over 360 #metabolicselfies shared! It is estimated that each person has between 200 and 300 followers on Facebook.  So, with 360 selfies shared, and an average of 250 followers each, around 90,000 people will have learnt a little bit about what a […]

RareConnect Platform for Urea Cycle Disorders

RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to enable families and patients to join discussions, share stories and knowledge, ask questions, meet others, and access resources. […]

EVENTS: Climb Urea Cycle Disease Day

Climb would like to say a massive thank you to all those families and professionals who joined us on the 4th June for our first Urea Cycle Disorder event.   We had over 50 people join us for a really interesting day which saw the launch of the RareConnect network, updates on a potential new […]

Breath Testing for Ammonia Levels instead of Blood Tests

Last month saw the 1st birthday of BreathDX a UK company driving the design and development a system to measure ammonia levels in IEM patients from their breath rather than blood. Thanks to the help from the CLIMB community BreathDX now have over £1m from UK funding bodies to develop and bring the AmBeR IEM […]