PCD Foundation

General Organizational Information

Organization Name:

PCD Foundation

Organization Acronym:

PCDF

Year Established:

2009

Mission Statement:

The PCD (Primary Ciliary Dyskinesia) Foundation seeks to promote research, increase public awareness, and provide information and support services for individuals with inherited ciliary disorders.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Primary ciliary dyskinesia

Organizational Contact Information

Title:

President

Degree:

First Name:

Michele

Middle Initial:

Last Name:

Manion

Address:

10137 Portland Avenue South

Minneapolis, MN, 55420

Phone:

+1 952 303 3155

Email:

info@pcdfoundation.org

Website Address:

http://www.pcdfoundation.org

Resources and Services Provided

Languages spoken:

Spanish

English

French

Printed materials available in:

Spanish

English

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Researchers

Other

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Peer support

Referrals for non-medical services

Other

Awareness programs

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Advocacy

Other

Educational materials include:

Fact sheet(s)

Membership directory

Journal articles on condition

Pamphlet(s)

Research updates

Newsletter

Bibliography

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Scholarships

Other