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The challenges faced by people affected by rare diseases are many, but they are also opportunities to improve care in each area including diagnosis, information, coordinated care, research and treatments. This workshop will examine these challenges and allow the participants to develop ideas to improve each area.


Co-hosted by Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

This workshop will be led by Rare Disease Lead Consultant and Sister for the Children’s First Rare Disease Centre in the World, who have vast experience of the topic. A highly interactive session which will allow participants to become familiar with the challenges faced by those affected by rare diseases and thereby have greater insights which will be useful for their roles.

Previous conference attendees included:


Abeona Therapeutics; Agency for Medicinal Products and Medical Devices of the Republic of Slovenia; AKU Society; Alexion Pharma International Intl; Apex Healthcare Consulting Limited; Boehringer Mannheim GmbH; Cello Health Insight - London; Chiesi Farmaceutici SpA; Debio Pharm S A; Dorphan; Findacure Development; Genethon; Genetic Alliance; Grifols Deutschland; Grunenthal GmbH; GSK; GW Pharmaceuticals; I.D.E.A. Ltd; ICON Clinical Research; INC Research; Infusion Pharma Consulting LLC; Loulou Foundation ; Merck Serono; NDA Regualtory Science Ltd; Newcastle University; Orphazyme ApS; Otsuka Europe Development and Commercialisation; Otsuka Pharmaceutical Europe Ltd; Pfizer Group; PSR Group B.V.; PSR Orphan Experts; Raglan Capital; Rare Disease UK; Roche; Roche Products; Russian Respiratory Society; Shire Pharmaceuticals Limited; Society for Mucopolysaccharide Diseases; Swedish Orphan Biovitrum (SOBI) AB; Taylor & Francis Group; The Birmingham Childrens Hospital; The Medical Research Network; The Ultra Rare Diseases Disorder & Disabilities Foundation; Thomson Reuters; Tikomed; University College London; Zogenix Inc

Workshop LEADER


Larissa Kerecuk

Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

Dr Larissa Kerecuk is very proud to be the Rare Disease Lead at Birmingham Children’s Hospital where she is developing the first Children’s Rare Disease Centre in the UK. This centre will provide a better integrated holistic care for children, young people and families affected by rare diseases as well as increasing access to research and new treatments.
Larissa is the lead for the 100 000 Genome Project at Birmingham Children’s Hospital, the lead recruiter in the West Midlands, which will provide a diagnosis and personalised approach to many yet undiagnosed children.
As Consultant Paediatric Nephrologist, Larissa specialises in treating children with kidney diseases including those on dialysis, which requires a holistic approach. Larissa is also Renal Research and Transition Lead and places great importance in integrating care for all patients. Larissa is the founder and coordinator of the Autosomal Recessive Polycystic Kidney Disease Rare Disease Group in the UK and has established international collaborations with the US and Europe. Larissa also developed the Human Factors Course to improve patient safety. More recently Larissa has been appointed as the NIHR Clinical Specialty Lead for Paediatrics in the West Midlands and her vision is for research to become an integral part of everyday NHS care.

Birmingham Children's Hospital

Birmingham Children’s Hospital is a leading UK specialist paediatric centre, offering expert care to 90,000 children and young people from across the country every year. Providing the highest quality treatment and care to young patients, supporting their loved ones and advancing medical innovation has been the driving force behind the hospital since first opening its doors in 1862.
Today, the award-winning, world-renowned hospital has a 3,700-strong team with a reputation for excellence in many life-changing specialist services, including the treatment of the most complex heart conditions, chronic liver and kidney disease, cancer, serious burns, epilepsy, neurology and cystic fibrosis. It’s also home to Europe’s largest single site paediatric intensive care unit, a 24-hour accident and emergency service, regional major trauma centre and the world’s first children’s rare disease centre due to open in late 2017. We see over 9000 children with over 500 rare diseases per year and we have 11 Nationally Commissioned Services.

Workshop programme

13:30 Registration & Coffee

14:00 Opening Remarks

14:10 Session 1 – Challenges faced by those affected by Rare Diseases

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital
View Bio

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

14:50 Session 2 – New Therapeutic Opportunities

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital
View Bio

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

15:30 Afternoon Tea

16:00 Session 3 – Rare Disease Research

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital
View Bio

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

16:40 Session 4 – Rare Disease Transition from Paediatric to Adult Care

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital
View Bio

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

17:20 Closing Remarks

17:30 Close of Workshop


Holiday Inn Kensington Forum

97 Cromwell Road
London SW7 4DN
United Kingdom

Holiday Inn Kensington Forum

Holiday Inn Kensington Forum is perfectly situated in one of London’s most luxurious and beautiful areas within South Kensington. 

The hotel is just 2 minutes walk from Gloucester Road tube station for convenient travel to Hyde Park, London Eye, Tower Bridge plus more of London’s top attractions. There are also easy and direct links to some major transport hubs including Victoria, Kings Cross St Pancras, Paddington and Heathrow. 

This distinctive hotel in south London has so much to offer to make all guests really feel at home. The latest Holiday Inn relaunch is not just about the new look and feel for the hotel but to offer guests more benefits during their stay including a pillow menu for extra comfort during their sleep and a curved shower rail for more spacious feel. 

In addition to our 906 rooms, all business guests can take advantage of our meeting and conference facilities including High Speed Internet Access and unlimited Starbucks coffee at The Academy. Our hotel’s professional event planners are on board to help take the hard work and stress away from planning your next event. 

So whether you in London on business or pleasure, make the Holiday Inn London Kensington Forum your first choice of hotel and book your accommodation for our lowest internet rate guarantee. 



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CPD stands for Continuing Professional Development’. It is essentially a philosophy, which maintains that in order to be effective, learning should be organised and structured. The most common definition is:

‘A commitment to structured skills and knowledge enhancement for Personal or Professional competence’

CPD is a common requirement of individual membership with professional bodies and Institutes. Increasingly, employers also expect their staff to undertake regular CPD activities.

Undertaken over a period of time, CPD ensures that educational qualifications do not become obsolete, and allows for best practice and professional standards to be upheld.

CPD can be undertaken through a variety of learning activities including instructor led training courses, seminars and conferences, e:learning modules or structured reading.


There are approximately 470 institutes in the UK across all industry sectors, with a collective membership of circa 4 million professionals, and they all expect their members to undertake CPD.

For some institutes undertaking CPD is mandatory e.g. accountancy and law, and linked to a licence to practice, for others it’s obligatory. By ensuring that their members undertake CPD, the professional bodies seek to ensure that professional standards, legislative awareness and ethical practices are maintained.

CPD Schemes often run over the period of a year and the institutes generally provide online tools for their members to record and reflect on their CPD activities.


Professional bodies and Institutes CPD schemes are either structured as ‘Input’ or ‘Output’ based.

‘Input’ based schemes list a precise number of CPD hours that individuals must achieve within a given time period. These schemes can also use different ‘currencies’ such as points, merits, units or credits, where an individual must accumulate the number required. These currencies are usually based on time i.e. 1 CPD point = 1 hour of learning.

‘Output’ based schemes are learner centred. They require individuals to set learning goals that align to professional competencies, or personal development objectives. These schemes also list different ways to achieve the learning goals e.g. training courses, seminars or e:learning, which enables an individual to complete their CPD through their preferred mode of learning.

The majority of Input and Output based schemes actively encourage individuals to seek appropriate CPD activities independently.

As a formal provider of CPD certified activities, SMI Group can provide an indication of the learning benefit gained and the typical completion. However, it is ultimately the responsibility of the delegate to evaluate their learning, and record it correctly in line with their professional body’s or employers requirements.


Increasingly, international and emerging markets are ‘professionalising’ their workforces and looking to the UK to benchmark educational standards. The undertaking of CPD is now increasingly expected of any individual employed within today’s global marketplace.

CPD Certificates

We can provide a certificate for all our accredited events. To request a CPD certificate for a conference , workshop, master classes you have attended please email events@smi-online.co.uk

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