Next Generation of Cystinosis‘ purpose is to provide social support, emotional and psychological support to adults living with cystinosis. We also will disseminate medical and scientific education on cystinosis in adults, and we will lobby for the interests of all persons affected by cystinosis on the federal, state and local levels.
Unfortunately, there is no organization within the rare disease community that specifically addresses the needs of adults living with cystinosis. However, there are two organizations in the United States that do provide support for parents and families of children living with cystinosis.
Therefore, several adults living with cystinosis decided to build a new organization for the cystinosis community, called Next Generation of Cystinosis
Our organization is new, but we are registered in the State of Iowa as a non-profit, and we have an Employer Identification Number and we do have a bank account.
To cover start-up costs for the organization and to help meet the goals above, we are raising $2,000.
These funds will specifically be used for the following:
- This website
- P.O. Box
- 501 c 4 filing fee
- Face-to-Face Board Meetings 1x yearly
- Face-to-Face Adult Cystinosis Conference 1x yearly
- Among others