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:

You can help Genetic Alliance UK if you are a person living with or caring for a person with PNH by watching this video and then completing our brief survey.

Please Click Here to be taken to our survey. 

 

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: