As PNH is an ultra rare condition, finding a patient group in your own country is hard enough let alone finding other patient groups around the world to share information, knowledge and experiences. It took a few years to get us together but we are very excited to now be the PNH Global Alliance!
The 9 patient groups which currently make up the Alliance are from 11 different countries: England, Wales and Northern Ireland, Canada, Germany, France, Russia, Spain, Poland and the Netherlands. We work together on common issues to benefit the PNH population, both in our individual countries and the PNH population globally. Our first meeting was in Amsterdam in December 2018 and we have since also met at the European Haematology Congress in Amsterdam in June 2019. We otherwise meet virtually.
Our primary motivations to create the PNH Global Alliance were the need to share information and expertise, collaborate on our common challenges, take joint approaches and leverage our combined limited numbers. The Alliance also provides our stakeholders with an umbrella group with which they can make contact and be directed to the most appropriate person within our network. It is anticipated that the Alliance will only grow to include other countries in the near future. Please get in touch if you wish to get in touch with the PNH community or have a PNH patient group and you might wish to join us or would like to know how to go about setting up a group in your own country.
A Global Community
Although PNH is an ultra-rare disease, you are not alone. The Alliance has been created to bring our global community closer together so that we can collaborate and support one another.