BPAN AND NBIA PATIENT ADVOCACY ORGANIZATIONS
WORKING TOGETHER WITH A SHARED MISSION
While BPAN continues to be an ultra-rare disease, with a population that is widely scattered globally, BPAN Warriors and multiple patient advocacy organizations exist today that share a common mission: to improve the health and welfare of individuals who live with BPAN. Part of this mission is to identify the most promising research that may lead to treatment opportunities that will stop the progression of this devastating disease, provide reliable symptom management and ameliorate daily healthcare challenges, advocate for fair and equitable access to healthcare, homecare, equipment and diagnostic services, and ultimately, find a cure for BPAN.
Our collective experience and shared knowledge is the cornerstone of our global mission. We continue to work with our global partners to ensure that we work together towards our common mission. Together we strive to provide BPAN specific resources, research updates and most importantly facilitate ongoing connection between our BPAN patient families.
While there is work to be done, we are proud to be a part of a global network of collaborative partners who understand the importance of patient-centered initiatives and realize how critically important it is to place the patient front and center.
1610, CHEMIN DES GRANGES
Tel: +33 (0)6 87 25 92 45
Siren Number 841 375 51
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
679 route de Montony
01800 LE MONTELLIER
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.
NBIA Disorders Association
Contact: Patricia Wood
NBIA Disorders Association
2082 Monaco Ct.
El Cajon, CA 92019-4235
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.
A world in which NBIA Disorders no longer causes suffering or loss of life.
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.