International Niemann–Pick Disease Alliance
Sometimes in such a big organisation as the INPDA, our various member groups can be overshadowed, but we want to show just how important each and every member group is in making the INPDA work. In the INPDA Spotlight this month is NPSuisse. In the post below we learn more about their wonderful organisation, including their history, the opportunities they have had and the challenges they have faced.
Tell us how your organization got started?
Beginning of 2011 four families with diagnosed NP-C children and one family with a good skill in management of Swiss associations decided to create NPSuisse. The association got some seed money from NP Selbsthilfe Gruppe Germany to start. This was a great help for a successful start.
What are some of the opportunities that your organization has?
Switzerland is small. When NPSuisse started we immediately developed good communications channels, not only on the continent. Without internet it would have been impossible. In spite of lack of time and hard family life, Swiss families with affected children were strong enough to run our association and to collect private financial support until today.
What are some of the biggest challenges your organization faces?
Swiss rare disease associations have to find their way alone. The Swiss rare disease umbrella organization ProRaris is more concerned by patients without diagnostic or with diagnostic but without treatment. In spite of a Swiss concept for rare diseases health authorities are not willing to consider quick changes. Today there are for NP some treatment expectancies, but, under ultra-rare conditions and in spite of the good economy of the country, huge discrepancy exists between the scientific medical opportunities and the Swiss regulation / social insurance support. The challenge for NP is to participate in the adjustment of the political recognition of fatal rare diseases, particularly when they are ultra-rare.
Are there government resources and support available to those in your community?
The difference between the health budget of the Swiss population and the treatment expenses for rare diseases in Switzerland is so huge that an effort for a special rare diseases support would not really affect the government resources. To fight for a minority within a democracy is not easy. Rare diseases awareness campaigns in Switzerland and abroad help us.
Are there gaps you see currently or emerging in the support government gives your community?
As long as legal aspects are not adjusted for rare diseases, NPSuisse does not expect a real improvement of government support.
What would be your one wish for your organization in the years ahead?
To follow-up and support research and development of new treatments for the NP community.
Participate to the improved access to the best possible treatments for NP in Switzerland, also when expensive and complicate.
Is there anything else you would like to share about your organization?
The international cooperation is fundamental for our organization. We hope not to be left behind just because we are small and not belonging to a larger union. NP has no boarder.
A huge thank you to NPSuisse for kickstarting our INPDA Spotlight series and providing an insight into their fantastic organisation. If you want to learn more about NP Suisse email firstname.lastname@example.org, take a look at their website here, or see what they have been up to lately by checking them out on Facebook. If you are interested in learning more about the member group that represents you, why not check out our ‘About’ page for a list of the organisations that are part of the INPDA? Stay tuned for another INPDA Spotlight next month!