XLP Research Trust

General Organizational Information
Organization Name: 
XLP Research Trust
Branch/Affiliation: 
HQ only
Year Established: 
2009
Type of organization: 
International Condition(s)-specific organization
Mission Statement: 
The XLP Research Trust exists to (1) Promote and fund research into the cause, management, symptoms and cure for XLP (2) Provide a point of contact and support for those families affected by XLP (3) Raise the awareness of XLP amongst the medical profession and the general public
Status of organization: 
Unincorporated non-profit
Professional/Medical Board?: 
Yes
501(c)3 Status?: 
No
Paid staff?: 
No
Board of Directors?: 
Yes
Serves the following conditions
Diseases: 
X-Linked Lymphoproliferative Syndrome (XLP)
Organizational Contact Information
Prefix: 
Mr.
First Name: 
David
Last Name: 
Hartley
Address: 
60 Winchester Road
Romsey, SO51 8JA
Phone: 
+ 44 0 1794 521077
Email: 
info@xlpresearchtrust.org
Website Address: 
http://www.xlpresearchtrust.org
Resources and Services Provided
Languages spoken: 
English
Printed materials available in: 
English
Information provided for: 
Affected individuals
Care providers
Families of affected individuals
Media
Other
Range of services include: 
Peer support
Other
Awareness programs
Political action
E-mail list
Genetic information
Speakers
Chat room
Other
Educational materials include: 
Fact sheet(s)
Slides
Pamphlet(s)
Research updates
Newsletter
Website
Other
Conferences/workshops for: 
Other
Financial assistance for: 
Other
Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org