BPAN AND NBIA PATIENT ADVOCACY ORGANIZATIONS

WORKING TOGETHER WITH A SHARED MISSION

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AUTOUR DUBPAN

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.
 

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Association BPAN France
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.

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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.

Our Vision

A world in which NBIA Disorders no longer causes suffering or loss of life.

Our Goals

  • To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.

  • To share up-to-date information about treatment and care options with all members of the NBIA community.

  • To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.

  • To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.

  • To build an expanding base of committed contributors who will help provide funds to achieve our vision.

  • To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.

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Switzerland: NBIA Suisse
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.