Periodic Paralysis International/HKPP Listserv

General Organizational Information

Organization Name:

Organization Acronym:

PPI

Year Established:

1996

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to: 1) provide up-to-date accurate medical information about the periodic paralyses to patients and physicians; 2) provide peer support for patients; 3) encourage patients to be informed and involved in the management of their symptoms.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Ion Channelopathies

Andersen-Tawil Syndrome

Hypokalemic periodic paralysis

Hyperkalemic periodic paralysis

Paramyotonia congenita

Periodic Paralysis

Thyrotoxic Hypokalemic Periodic Paralysis

Organizational Contact Information

Title:

Education Coordinator

First Name:

Deborah

Last Name:

Cavel-Greant

Email:

calexeditor@nucleus.com

Website Address:

http://theperiodicparalysisnewsdesk.blogspot.com/

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Peer-to-peer counseling

Medical referrals

Genetic information

Awareness Programs

Advocacy

E-mail list

Genealogy

Educational materials include:

Fact sheet(s)

Booklet(s)

Website

Journal articles on condition

Research updates

Conferences/workshops for:

Affected individuals and/or families

Research Management:

Participant recruitment

Organization has intellectual property (IP)

Providing information about clinical trials

Major research collaborators :

Frank Lehmann-Horn