Inform

There are several associations and communities in each country. They deal with either one of the many rare diseases (over 7,000 rare diseases), or disease group. Neurodegeneration with Iron Cerebral Accumulation (NBIA, formerly Hallervorden-Spatz Syndrome) brings together a group of rare neurodegenerative diseases characterized by an accumulation of iron in the brain:

PKAN Pantothenate Kinase-Associated Neurodegeneration (PANK2 gene)
PLAN PLA2G6-Associated Neurodegeneration (PLA2G6 gene)
MPAN Mitochondrial-membrane Protein-Associated Neurodegeneration (C19orf12 gene)
BPAN Beta-propeller Protein-Associated Neurodegeneration (WDR45 gene)
CoPAN COASY Protein-Associated Neurodegeneration (COASY gene)
FAHN Fatty-Acid Dyroxylase-associated Neurodegeneration (FA2H gene)
CP Aceruloplasminemia (CP gene)
Kufor-Rakeb (ATP13A2 gene)
Neuroferritinopathy (FTL gene)
Woodhouse-Sakati Syndrome (DCAF-17 gene)
...

Main language: English

BPAN Warriors

The first community BPAN. BPAN Warriors is an increasingly large international community whose relatives are directly affected by BPAN. They strive to provide parents, siblings, family members, friends, caregivers and health professionals with a safe and compassionate online forum to share information and facilitate access to research scientific and community resources.

Main language: Spanish

ENACH

Enach is a non-profit, non-governmental organization born in Spain in 2013 on the initiative of a group of relatives and friends of people affected by diseases of the NBIA group (neurodegeneration linked by an accumulation of iron in the brain). Antonio Lopez is the person who took the initiative and is currently the president and representative of the association.

Main language: Dutch

Stichting ijzersterk (foundation of iron)

Dutch foundation created in 2013, which is mainly used to raise funds to promote research on NBIA, make known the disease, through social networks, local radio stations ... and especially establish and maintain contact with patients and people who wish to participate in this foundation. Just like our association, this association was born by a lack of information in this language and the obligation to fetch information in another language.

Main language: German

Hoffnungsbaum eV (The tree of hope)

Since 2002, Hoffnungsbaum eV has been the German self-help group for the NBIA. Their website, informs about NBIA group diseases as well as their support group and activities.

Main language: German

Hoffnungsbaum eV (The tree of hope)

Since 2002, Hoffnungsbaum eV has been the German self-help group for the NBIA. Their website, informs about NBIA group diseases as well as their support group and activities.

Main language: German

Hoffnungsbaum eV (The tree of hope)

Since 2002, Hoffnungsbaum eV has been the German self-help group for the NBIA. Their website, informs about NBIA group diseases as well as their support group and activities.