Liss

LISS e. V. is a German nonprofit association supporting people affected by lissencephaly and their families.

It brings together members, families, and others connected to the condition, offering opportunities to share experiences, find community, and access information. The association organizes in-person and online parent gatherings, informal Zoom meetings, and an annual family event, with child care arranged for some gatherings. Its programs may include expert contributions on topics such as human genetics, psychotherapy, care, legal advice, and hospice support.

LISS also provides information about lissencephaly, research, the PVNH condition associated with Filamin A, nutrition, and the experiences of affected children and families. The organization recognizes the needs of bereaved parents and holds dedicated gatherings focused on connection and mutual support. Members can participate in association meetings, contribute to its work, and receive updates through its website and social media channels.

LISS invites the public to support its work through donations and fundraising partnerships, helping strengthen practical support, information sharing, and a sense of community for affected families