PNH – Documentary

produced, written and voiced by Danielle Robertson.

People who have a rare disease called PNH talk about what it is and why having a rare disease often means late diagnosis and hence more complications. Rare disease groups face a huge struggle to access lifesaving treatment because it is expensive. The important role support groups play in allowing newly diagnosed patients and existing patients ongoing emotional support including access to counselling and unemployment assistance.

Useful brochures to download:

Information for General Practitioners managing patients with PNH

Download PDF..

General Information PNH
Download PDF..

Travel Information
Download PDF..

Become a member of the PNH Support Association
Download PDF

Medical Journal paper that explains a case study of an Italian PNH patient who underwent a splenectomy
Download PDF

Even though PNH is rare you are part of a larger network of Australians who are also living with a rare disease. Here are some of their stories.
Dowmload PDF

Other useful links:

http://www.gsnv.org.au/
Genetic Support Network of Victoria – To give support and choice to people living with Genetic conditions.

http://www.rarevoices.org.au/
Rare Voices Australia  – The unified voice for all Australians living with a rare disease.

www.orpha.net
International support group for all rare diseases based in Europe and has information on PNH and other PNH support groups around the world.

http://www.pnhsanz.org.nz/
New Zealand PNH Support association and group.

http://www.pnhdisease.org/index.php
Global PNH Support Group Website.

http://www.marrowforums.org/pnh.html
Chat forum where you can chat to other people around the world with PNH and other rare diseases.  Note that they have set up an Australian based chat forum for PNHSAA use.

http://pnhfoundation.org/home
PNH Research and Support Foundation website from the USA.  The website details information on medical research and various other useful links.

http://soliris.net/patients/pnh-organizations
This website provides a list of PNH community and organisations from around the world.

http://www.pnhinterestgroup.org/resources/
International PNH Interest Group – website provides numerous resources and contacts relating to PNH.

Information for General Practitioners managing patients with PNH