BPAN AND NBIA PATIENT ADVOCACY ORGANIZATIONS
WORKING TOGETHER WITH A SHARED MISSION
Website: https://www.autourdubpan.fr/
1610, Chemin Des Granges
42155 Ouches
FRANCE
Tel: +33 (0)6 87 25 92 45
Siren Number 841 375 51
Email: contact@autourdanias.fr
The association ‘Around BPAN ‘ was created on July 16th 2018. It’s open to everyone. It’s an association of families and carers.
While there is still much work to be done, we are proud to be a part of a network of collaborative partners who understand the importance of global participation in patient-centered initiatives and realize how critically important it is to place the patient front and center.
ASSOCIATION BPAN FRANCE
Website: https://bpanfrance.fr/
679 route de Montony
01800 Le Montellier
FRANCE
Email: contact@bpanfrance.fr
Created in January 2019 by families who decided to fight for their child with BPAN, the BPAN France Association is a non-profit association, under 1901 law, recognized in the general interest, open to all (parents of child with a BPAN diagnosis, family members, friends, members of the medical profession or researcher…) whose main goal is to support patients and their families and to stimulate research with a view to treatment. The Association is in a race against time.
Website: https://nbiadisorders.org/
Contact: Patricia Wood
E-mail: pwood@NBIAdisorders.org
Our Mission
In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world.
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Our Vision
A world in which NBIA Disorders no longer causes suffering or loss of life.
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Our Goals
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To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.
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To share up-to-date information about treatment and care options with all members of the NBIA community.
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To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.
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To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.
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To build an expanding base of committed contributors who will help provide funds to achieve our vision.
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To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.
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Welcome to the Iron Strong Foundation, the Dutch patient group for people with NBIA and their families. On this site we inform you about what NBIA is, which forms are currently known, about the latest studies and important data. You can also come here for family stories, talk with fellow sufferers and/or researchers within a closed forum or sponsor us. IJzersterk is a Dutch patient group that is committed to promoting research into NBIA and providing support for patients. Stichting IJzersterk is part of the German patient association Hoffnungsbaum. We started this group in 2013 after we had noticed from our own experience that there is too little for patients with NBIA in the Netherlands. For information about the disease you were soon forced to go to foreign sites and also contact with fellow sufferers mainly took place through an organization such as Hoffnungsbaum. With the help of other NBIA organizations, united in the NBIA Alliance, we were able to set up our own group in the Netherlands.
Website: https://www.hoffnungsbaum.de/
Tel: +49 (0) 2051/68075
"The purpose of the association is the non-material and financial support of the research and treatment of NBIA diseases as well as the counseling and provision of information about the disease." ( Statutes of Hoffnungsbaum eV)
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Hoffnungsbau eV is a non-profit association whose primary purpose is to promote research. As lay experts, however, we are often the first point of contact for those affected after the diagnosis or with any kind of disease-related questions. In this way, we perform typical self-help tasks.
Website: https://nbiasuisse.org/
Contact: Fatemeh Mollet
E-mail: nbiasuisse@gmail.com
NBIA Suisse – the Swiss patient advocacy association
We are a non-profit organization that supports the scientific research aiming at finding a cure for patients suffering from neururdegeneration with brain iron accumulation (NBIA).
Our team at NBIA Suisse raises public awareness about this disease, supports efforts to better understand and diagnose the illness, and, finally, find innovative therapeutics for these young patients. To achieve our goals, we provide support and information to patients, families, clinicians, researchers. Further, we evaluate, initiate and selectively fund research activities in collaboration with academic centers, while we remain open to join efforts with industry partners across all subforms of NBIA disorders.
Please check our NBIA Suisse news page for ongoing and past activities.