All about LAM: Insights into rare disease diagnosis, treatment, research and communication

Discover the latest insights on Lymphangioleiomyomatosis (LAM) in the next RESP webinar

Date: Monday 2 November, 7pm - 8pm

About the session

This webinar features expert speaker Professor Simon Johnson and patient representative Gill Hollis.

In this session, you are invited to step into the world of rare respiratory diseases by exploring Lymphangioleiomyomatosis (LAM) - a very rare disease that almost exclusively affects adult women.

You will learn about the diagnosis, referral and treatment of patients with this condition, gain insights into the current state of frontline research, and hear about the potential to build meaningful patient relationships and a rewarding career as a rare respiratory clinician-researcher.

This session will cover:

• Current management: the importance of early diagnosis and early treatment including essential information about LAM symptoms, disease variants and treatment pathways, and the role of the National LAM Centre (Nottingham)
• Future perspectives: the need to identify new treatments and work towards a cure
  Expert patient voice: highlighting the positive impact of rare disease specialists

RSVP to book your place.

Meet the speakers

Professor Simon Johnson is Professor of Respiratory Medicine at the University of Nottingham, director of the Nottingham NIHR Respiratory Biomedical Research Centre and runs the UK National clinical services for lymphangioleiomyomatosis (LAM) and Rare Cystic Lung Diseases. He is a co-director for the LifeArc Centre for Rare Respiratory Diseases and co-leads the on the Centre’s development of disease models.

Simon’s research group work on mechanisms and interventions for tissue damage
in chronic lung diseases, including LAM, and methods to improve diagnostics and
management of rare lung diseases. Simon is a member of the LAM Foundation
Scientific Advisory Board and a professional advisor to the UK Tuberous
Sclerosis Association.

Gill Hollis has a background in law and investment, but in 1992, aged 27, she was diagnosed with a rare lung condition called LAM. At that time, little was known about LAM, no treatments were available and her prognosis was bleak. After undergoing a lung transplant in 2004, she developed a parallel career supporting and representing the interests of both LAM and lung transplant patients.

As a trustee and former chair of the charity LAM Action, Gill’s experience includes work with SaBTO and ELF, collaborating on funding bids, trials, papers and patient information. Gill is aware that she owes her own life to medical advances and is keen to ensure that the patient voice is clearly heard by research scientists and clinicians.