PCH Familie
US Tax-exemption status for European non-profit organization - PCH Familie e.V.
Enable US patients and donors to contribute and donate for our research activities
Posted June 16, 2024
Background & Context
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. With the current grant through the Chan Zuckerberg Initiative, we have now the opportunity to solidify our global outreach and bring the patient organization to the next level. To support our vision to find a therapy for PCH until 2030 and to fund our road to a cure (see also www.pch2cure.org) we want to extend our outreach also to US donors. Furthermore, this is also an opportunity to support and integrate our US families with dedicated funding.
Immediate Problem
Currently, we don`t have a path to collect US donations or have US families contribute financially to our research activities.
Also we would like to understand the best path forward to a legal entity structure for a global patient organization for a rare disease.
Work & Deliverables
We, PCH-Familie e.V., are a German nonprofit patient organization with a tax-exemption status on Germany.
Deliverable: How can we gain a tax-exemption and/or nonprofit status according to US law as a non-US organization?
Preparation Phase
- Schedule an introduction call to understand the problem and ask clarifying questions
Collaboration Phase
- Complete research on the topic
- Prepare and outline document on legal requirements and possible options (Pro/cons per option)
- Attending virtual meeting to discuss options and recommendations
- Incorporate feedback and finalize document
Wrap Up
- Handover document that outlines necessary steps and actions
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.
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.