Disease, Disorders, Medical Disciplines

Dravet Org

aka dravet.org

Afton, MN

This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.

This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

Mission

The mission of dravet.org is to serve as the global patient advocate organization giving support to families, saving the lives of our children, promoting and funding medical research to find effective treatments and cures for Dravet syndrome and Dravet Spectrum Disorders.

Ruling Year

2006

Principal Officer

Joan Vogel Skluzacek

Main Address

P.O. Box 217

Afton, MN 55001 USA

Keywords

Epilepsy, Febrile Seizures, Dravet syndrome, SMEI, severe myoclonic epilepsy of infancy, SMEB, sodium channelopathies, intractable childhood epilepsy,ion channel epilepsy, Generalized Epilepsy with Febrile Seizures (+), Severe Infantile Mulitfocal Epilepsy, Genetic epilepsy, Intractable Childhood Epilepsy with Generalized Tonic Clonic Seizures

EIN

20-4760085

 Number

6319003240

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Epilepsy (G54)

Epilepsy (G54)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs + Results

What we aim to solve New!

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Where we workNew!

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External Reviews

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Financials

Dravet Org

Fiscal year: Jan 01 - Dec 31

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Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2011, 2011 and 2010
A Pro report is also available for this organization for $125.
Click here to view a Sample Report.

Operations

The people, governance practices, and partners that make the organization tick.

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2011, 2011 and 2010
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable