The PNH Patient Group provides support to anyone affected by PNH, including those diagnosed with PNH, their friends and relatives. Some patients and their families find the support provided by the PNH Patient Group to be very helpful as PNH is a rare disease. Other patients prefer not to participate in the Group and this is entirely up to the individual.
There have been patient group meetings over the past 8 years in many different formats. Currently there is a national meeting run across the country once or twice a year which anyone (patients, relatives or friends) is welcome to attend. These are generally held in Leeds, Birmingham and London. Any questions regarding this can be directed to firstname.lastname@example.org.
One of the aspirations of the PNH Patient Group is to reach charitable status and to raise awareness of the disease whilst supporting those involved. It also provides an opportunity to meet other people with PNH, which may be difficult given the rarity of the condition.
There is an established patient group in Scotland called PNH Scotland. PNH Scotland, is a fully registered charity with the aim of raising awareness of PNH in Scotland provide information for newly diagnosed patients and ensure drug funding for those deemed to need it. For more information they have a Facebook page: http://www.facebook.com/pnhscotland.
These meetings are organised on an ad hoc basis and you will receive an invitation through the post. The PNH Service encourages and supports the PNH Patient Group and we are always happy to participate and speak at Meetings if wanted. However the Group is run by patients, for patients.