Mission
Since 1992, the Joubert Syndrome & Related Disorders Foundation has been an international network of parents sharing knowledge, experiences, and emotional support. The foundation plays an important role in educating healthcare providers and raising public awareness about Joubert Syndrome, while also promoting research initiatives that seek to better understand this rare disorder.
Basic Information
Tax-Exempt
Founded in
1994
EIN
52-1871536
Total Assets
$488.4 thousand
UN Sustainable Development Goals Supported
This organization contributes to the following United Nations Sustainable Development Goals. See the SDG page for more information.
Showing 3 of 4 goals
At a Glance
Connect With Other Families
Join a community of families navigating Joubert Syndrome together.
Healthcare Recommendations
Access valuable resources and recommendations for medical professionals.
JS Awareness Month
October is dedicated to raising awareness and funds for Joubert Syndrome.
Impact Stats
500+
Network Members
International Networking
Established a global network to connect families affected by Joubert Syndrome.
10
Conferences Held
Biennial Conferences
Hosted numerous conferences to bring together families, medical professionals, and researchers.
$200,000+
Grants Distributed
Grants for Families
Provides grants to support individuals affected by Joubert syndrome.
Our Programs
Be You
Funds to help affected individuals increase independence and growth through education or activities.
Learn MoreBe Brave
Immediate help for families in crisis through delivered meals and additional needs.
Learn MoreMIP Score (Beta)
The MIP Score is in beta! We'd love any feedback you may have.
The MIP Score and it's methodology is purely used as a way to visualize how a nonprofits public financial data compares against others. It doesn't reflect the unique circumstances and impact that a nonprofit has.The MIP Score should never be used to say one charity is better than another.
Overall Score
56
44
/100
Program Expense Ratio
15.64%
2
/20
Program Revenue Growth
0.00%
2
/20
Leverage Ratio
0.002135
20
/20
Working Capital Ratio
4.533
18
/20
Fundraising Efficiency
0
2
/20
Latest Filing Data: Form 990
Fiscal Year:2021
Source:Source: Self-reported by organization
Financial Details
Revenue
| Category | Amount | Percentage |
|---|---|---|
| Contributions, Gifts, and Grants | 162.9K | 99.37% |
| Program Services | 0 | 0.00% |
| Investment Income | 0 | 0.00% |
| Sales of Non-Inventory Assets | 0 | 0.00% |
| Other Notable Sources | 0 | 0.00% |
| Total Revenue | 164K | 100.00% |