PCH Familie
Help a Rare Disease Organization with US Tax-exemption Status
Raising public awareness for rare neurodegenerative diseases affecting children.
Posted December 17, 2024
Work & Deliverables
We are a German nonprofit patient organization with a tax-exemption status in Germany. We're looking for a lawyer to help us gain a tax-exemption and/or nonprofit status in the US.
Our German patient organization has been active for a very long time and is a registered legal entity since 2018. We are the only registered patient organization worldwide for Pontocerebellar Hypoplasia (PCH). There are patients all over the world and a large group of families in the US.
PCH Familie
We are non for profit patient organization registered in Germany working on setting up an international patient & family network for Pontocerebellar Hypoplasia. Our work is providing disease education for families and treating physicians as well as raising public awareness for rare neurodegenerative diseases affeting children. With our project PCH2cure we want to find a treatment for Pontocerebellar Hypoplasia Type 2 (most common form) by 2030.
Volunteer for this project!
PCH Familie would love your help with this project. Enter your name and email address to get started!
PCH Familie
We are non for profit patient organization registered in Germany working on setting up an international patient & family network for Pontocerebellar Hypoplasia. Our work is providing disease education for families and treating physicians as well as raising public awareness for rare neurodegenerative diseases affeting children. With our project PCH2cure we want to find a treatment for Pontocerebellar Hypoplasia Type 2 (most common form) by 2030.