Haemophagocytic Lymphohistiocytosis (HLH) is a very rare disease; an estimated 1.2 per million children are affected each year. HLH covers a number of conditions, all differing in cause, treatment and outcome. It can be inherited (primary, also called FHL) or acquired (secondary).

HLH can be difficult to diagnose. Haematologists, immunologists, rheumatologists, hepatologists, oncologists, neurologists, paediatricians and others may all find themselves confronted with undiagnosed HLH.

It can also be a difficult, isolating disease for patients and families to manage, although the outcomes for children with HLH have improved significantly over the past 20 years.

To increase awareness of HLH and support for families, we’re delighted to be hosting two parallel conferences on HLH this September: one for medical professionals and one for families of children with HLH.

These conferences are supported by funds raised by the Mole family and friends in memory of Tom. #TM8


Understanding HLH for Medical Professionals

Join us for a day-long conference exploring paediatric Hemophagocytic lymphohistiocytosis (HLH).

Date: 
21 September 2019, 8.30am - 5pm

*UPDATE* MEDICAL PROFESSIONALS ONLY can turn up on the day and register upon arrival

Venue:

Education Resource Centre,

Lower Ground Floor

Birmingham Women’s Hospital,

Edgbaston,

Birmingham,

B15 2TG

 (please note, this conference is NOT at Birmingham Children’s Hospital)

Conference Fee:              

£50, including refreshments and lunch

Audience:                           

This conference is relevant to all medical professionals involved in the diagnosis and treatment of HLH, from consultants to trainees. RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines.

Learning Aims:

This one-day conference will allow delegates to learn in detail about a number of aspects of HLH, including:

  • How to diagnose HLH and/or refer patients for HLH diagnosis
  • How to differentiate HLH and its disease variants from other similar diseases
  • The pathogenesis of HLH and how to treat it, including via transplant
  • The Genetics of HLH, including laboratory investigations
  • HLH and immunology

Medical Case Studies and Patient Journeys will illustrate the disease in context. During the day, there will be chances to network with other professionals and to speak to families and children with HLH attending our parallel Families’ Conference.

The Agenda for the Day: 

‘Understanding HLH’ for Medical Professionals’

Time

Session

8:30-9:00

Arrival, Registration and Coffee/Pastries/Fruit

9:00-9:20

Welcome

9:20-10:00

Session 1: Case Studies (4) (Plenary)
Ashley Vardon & Amitav Parida, BCH
Amy Mitchell, John Radcliffe Hospital, Oxford
Meranthi Fernando, BCH
Kirsty McLellan

10:00-10:30

Session 2: Diagnosis of HLH (Plenary)
Anupama Rao, GOSH

10:30-11:00

Session 3: Pathogenesis of HLH (Plenary)
Nitya Gulati, Texas Children's Hospital

11:00-11:15

Coffee / Comfort Break

11:15-11:45

Session 4: Treatment of HLH (Plenary)
Jayashree Motwani, BCH

11:45-12:15

Session 5: Transplant in HLH (Plenary)
Beki James, Leeds General Infirmary

12:15-12:45

Session 6: CNS HLH (Plenary)
Evangeline Wassmer, BCH

12:45-13:30

Networking Lunch

13:30-14:00

Session 7: My HLH Journey (Plenary)
3 x patient journeys (10' each)

14:00-14:30

Session 8: HLH, an Immunologist's Perspective (Plenary)
Austen Worth, GOSH

14:30-15:00

Session 9: MAS/HLH and Ferritin Audit (Plenary)
Ethan Sen, Great North Children's Ho
spital

15:00-15:30

Session 10: Histiocytosis/LCH/ HLH: What's what? (Plenary)
Frank Mussai, BCH

15:30-15:45

Coffee / Comfort Break

15:45-16:15

Session 11: Laboratory Investigations in HLH (Plenary)
Patricia Plumbly, GOSH

16:15-16:45

Session 12: Genetics in HLH (Plenary)
Hannah Titheradge, BWH

16:45-17:00

Closing Remarks, Thanks, Feedback

 


Families and HLH

Join us for a day-long conference exploring Hemophagocytic lymphohistiocytosis (HLH) in children.

 Date:                                     

21 September 2019, 9am - 1.30pm

 Venue:                                 

Education Resource Centre,

Lower Ground Floor                               

Birmingham Women’s Hospital,

Edgbaston,

Birmingham

B15 2TG

(please note, this conference is NOT at Birmingham Children’s Hospital)

 Conference Fee:               

Entry is free of charge for paediatric HLH patients and their families, but places must be booked in advance. Entry to the National Sea Life Centre is included, but places must be requested in advance.

 Join us for a half-day conference exploring Hemophagocytic lymphohistiocytosis (HLH) and its impact on children and families.

 This half-day conference has been specifically designed to bring together children and families dealing with HLH, both inherited (FHL) and acquired.

 You will have a chance to learn more about HLH and the treatment options available, as well as to question to our panel of physicians. The event also includes a chance to hear and share patient journeys, as well as

to give and receive support from other families dealing with similar issues.

 You will be able to meet and chat to delegates attending our parallel conference for medical professionals over lunch.

 During the afternoon, you are invited to take part in an optional trip to the National Sea Life Centre - a fabulous accessible family experience located in the heart of Birmingham.

How to Book:

All tickets should be booked online using the 'Families and HLH' booking link below.

Agenda for the Day:

Families and HLH’

Time

Session

9:15-9:45

Arrival, Registration and Refreshments

9:45-10:00

Welcome

10:00-10:30

Session 1: What is HLH? (Plenary)
Mark Velangi, BCH

10:30-11:00

Session 2: Bone Marrow Transplant and HLH (Plenary)
Nyree Cole, BCH

11:00-11:15

Coffee / Comfort Break

11:15-11:45

Session 3: Patient Journeys (Interactive Workshop)

11:45-12:15

Session 4: Long term toxicity / problems post BMT (Plenary)
Alice Norton, BCH

12:15-12:45

Session 5: Q&A with Medical Panel (Group Q&A)
Conference Speakers

12:45-13:30

Networking Lunch

13:30-14:00

Closing Remarks, Thanks, Feedback, Travel instructions

14:00-14:30

Travel

14:30-16:30

Sea Life Centre
(optional)

(16:30-17:00)

Travel, Depart

Booking for this event has now closed.