Syndromes Without A Name USA

General Organizational Information

Organization Name:

Organization Acronym:

SWAN USA

Branch/Affiliation:

USA

Year Established:

2007

Brochure:

SWANbrochure.pdf

Type of organization:

National organization

Mission Statement:

We are an organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Undiagnosed Condition

No Diagnosis

Diagnosis Unknown

Organizational Contact Information

First Name:

Amy

Middle Initial:

Last Name:

Clugston

Address:

1745 Lorna Lane

Otsego, MI, 49078

Phone:

+1 269 692 2090

Toll Free Number:

+1 888 880 7926

Email:

amyclugston@undiagnosed-usa.org

Website Address:

http://www.undiagnosed-usa.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Families of affected individuals

Range of services include:

Referrals to research studies

Non-medical services

Advocacy

E-mail list

Educational materials include:

Fact sheet(s)

Website

Newsletter