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NHS PNH National Service Centre Website

http://www.pnhleeds.co.uk/hmds/


European PNH Patient Organisations and Websites

PNH Scotland 

https://www.facebook.com/pnhscotland

 

Spain

http://www.hpne.org

http://www.alheta.com

 

Italy 

 

Netherlands

http://www.bloedziekten.nl


European Network for Rare and Congenital Anaemias

http://www.enerca.org


International PNH Patient Organisations and Websites

American PNH Organisation Websites

http://www.pnhsource.com

http://www.pnhdisease.org

http://www.pnh.aamds.org


Aplastic Anaemia and MDS International Foundation

http://www.aamds.org

New Zealand

http://www.pnhsanz.org.nz

Australia

http://www.pnhsaa.org.au



Rare Disease Organisations Rare Disease UK  

http://www.raredisease.org.uk

 

International PNH Interest Group

http://www.pnhinterestgroup.org/resources/

http://soliris.net/patients/pnh-organizations

 

U Tube

Current Thinking on the Disease, Diagnosis and treatment - Dr Jamile Shammo speaks at the conference on "Living with Aplastic Anaemia, MDS or PNH" for patients and their families in Los Angeles, USA on 21 April 2012. 

https://www.youtube.com/watch?v=kElDdDZ2NLM&feature=youtu.be&list=UUo1hEH-o3PHIaQBfWvm1i5g



PNH Alliance

The PNH Alliance was launched in 2009 when the decision was made to introduce a nationally commissioned specialised service for PNH in England. The PNH Alliance includes members of the clinical and patient community and enables members to speak with one voice in the public policy environment.

See http://pnh-alliance.org.uk for more information.

 


Life Insurance

For more information please click on the attached link.

http://www.geneticalliance.org.uk/insurance.html

 

 


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