International Niemann–Pick Disease Alliance

INPDA Spotlight on Niemann Pick Selbsthilfegruppe Deutschland e.V.

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 Niemann-Pick Selbsthilfegruppe Deutschland e.V. 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.

1 . Tell us how your organization got started?

In 1997 the founding members got together through various publications in German newspapers. There were already some scientific articles about the ultra-rare disease, but all of them were written in english. Therefore they felt the need to establish an organization with solid foundation that could take care of providing publications in german, getting in contact with scientists, participating in meetings of already existing self-help groups in the USA and UK & organizing our own family meetings. One of the founding members, Edmund Fabianski, is still very active on the Board and has the responsibility for our group’s finances.

Another main benefit of founding a support group was the fact that being a non-profit, registered association, tax-deductible donations could be collected and scientific research actively supported. All board members are volunteers.

Over the years the support group grew to over 150 members and collected more than 1 million EURO through donations and membership fees since its foundation.

2. What are some of the opportunities that your organization has?

Being part of a worldwide community with dedicated families, researchers, clinicians.  We meet people that inspire our lives. People we would have never had the possibility to meet without that devastating blow. our community consists of a colorful patchwork of the most diverse professions and personalities.

3. What are some of the biggest challenges your organization faces?

One of the biggest challenge is not having enough manpower for too many duties. The world is spinning faster and faster, many enquiries need to be answered through different paths of communication (facebook, homepage, email, whatsapp,not to mention instagramm, twitter etc. Another big challenge is to find doctors and researchers interested to commit themselves to our rare disease. One of our main centers is not a reference center for metabolic diseases anymore.

4. Are there government resources and support available to those in your community?

There are government resources but again due to our big time issue we don’t have the manpower to apply for the resources and to work through bureaucratic processes.

5. Are there gaps you see currently or emerging in the support government gives your community?

Our umbrella organisation ACHSE (Alliance for chronic rare diseases) as well as the BAG Selbsthilfe (The Federal Working Group for Self-Help of People with Disabilities, Chronic Illnesses and Their Families) is in close contact with government and relevant institutions to ameliorate the situation for patients with rare and chronic diseases. The BAG Selbsthilfe mainly is commited in the fields self-determination, self-advocacy, integration, rehabilitation and participation of disabled and chronically ill people.

6. What would be your one wish for your organization in the years ahead?

Our wish would be to have more input from our members both ideas how to proceed, where to put our focus but also support in our daily patient group business.  In the future we would also very much desire to have a similar event like the annual German and worldwide NPC Forum that had been hosted by Actelion in the last years. It was essentiel for training interested professionals but also in the field of supporting networking professionals/professionals and professionals/patient groups.

7. Is there anything else you would like to share about your organization?

The best benefit we have for our community is Pfrieger’s Digest. Dr. Frank Pfrieger provides us with a regular review of research translated in not-researcher-language.

A huge thank you to Niemann-Pick Selbsthilfegruppe Deutschland e.V. for kickstarting our INPDA Spotlight series and providing an insight into their fantastic organisation. If you want to learn more about Niemann-Pick Selbsthilfegruppe Deutschland e.V.  email, 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!


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