About PNH Scotland
PNH Scotland was set up in January 2011 to support patients suffering from the very rare condition Paroxysmal Nocturnal Haemoglobinuria (PNH).
PNH Scotland is run entirely by volunteers so all funds donated go directly to support its charitable work and towards achieving its goal of giving patients their lives back.
PNH Scotland’s Objectives
Ensure all patients have access to the relevant treatment they need by collaborating with the Scottish Government and Scottish Medicines Consortium
Raise awareness of PNH and advance the education of patients, families and health professionals through the development and distribution of accurate, up-to-date information
Provide a point of contact for patients and their families ensuring those affected by PNH do not feel isolated or unsure of their condition
Meet The Team
Lesley Loeliger
Founder & Chair
Lesley was diagnosed with PNH in 2007 and set up PNH Scotland in 2011. She has a degree in Electronic & Electrical Engineering and tutors maths and physics.
Carmen Storrie
Fundraising Manager
Carmen was diagnosed with PNH in 2022, aged 21. Carmen got involved in the charity shortly after diagnosis and became fundraising manager in 2026. She works in Orthopaedic Theatres as a trauma product specialist.
Sheila Eves
Treasurer
Sheila became Treasurer for PNH Scotland in 2018. She is a retired GP, who is married to Simon and has grown up children.
Secretary and Trustees
Morgan Erskine
Secretary
Joy Embuscado Santos
Trustee
Jeff Loeliger
Trustee
PNH Scotland Timeline
Key milestones from through the years - from PNH Scotland’s founding in 2011 right up until the present day.
2011
PNH Scotland is founded. Petition submitted to the Scottish Parliament (with Genetic Alliance) to review SMC methodology for appraising rare disease medicines.
2012
Provided evidence to the Health & Sport Committee at the Scottish Parliament regularly over 2 years.
2013
Joined Scottish Parliament cross-party group for Rare, Genetic and Undiagnosed Conditions (member until 2023).
2014
New rare disease methodology introduced by the Scottish Medicines Consortium (SMC) following petition & the work of the Health & Sport Committee.
2016
Submitted Patient Group Submission (PGS) and presented at SMC PACE meeting to support Eculizumab (Soliris) submission - drug rejected.
2019
Sent PNH packs to all haematology departments in Scotland to support newly diagnosed patients.
2020
Submitted PGS and presented at SMC PACE meeting for Ravulizumab (Ultomiris) - drug approved.
2022
Submitted PGS to SMC to support Pegcetacoplan (Aspaveli) submission - drug approved.
2023
Sent PNH packs to all A&E departments across Scotland.
2024
Submitted PGS documents to support Danicopan (Voydeya), Iptacopan (Fabhalta), and Crovalimab (PiaSky) submissions to SMC - all drugs approved.
2025
Invited to join international PNH Community Advisory Board.
Related Topics
What is PNH?
A helpful guide on Paroxysmal Nocturnal Hemoglobinuria (PNH) including common PNH terminology and symptoms.
Find Out MorePNH Care in Scotland
PNH care in Scotland is based on a shared-care model. Find out more abut PNH care in Scotland on this page.
Find Out MoreLiving With PNH
Living with PNH can feel challenging, and every person’s experience of the condition will be different.
Find Out More