Videos: Self Management of Rare Conditions

Managing Paroxysmal Nocturnal Haemoglobinuria

Lesley Loeliger shares her story of how she manages PNH; a rare genetic condition that affects 1 - 5 people per million:

 

 

More Information

PNH Video Transcript

Genetic Alliance UK are currently helping people with PNH to form their own support and advocacy group. For information about this group please contact the Genetic Alliance UK Scottish Office.

Tel: 0131 651 4805 (Mon–Wed 9am-5pm)

Email:

 

Alternatively you can contact Lesley Loeliger directly

Email: