Tuesday, January 10, 2012

SSA INFO FOR DISABILITY Please read over!

OUTSTANDING OPPORTUNITY TO LET YOUR THOUGHTS BE KNOW TO THE SOCIAL SECURITY SENIOR OFFICIALS
Desiree Lyon has been invited to participate in a teleconference with officials of the Social Security Administration (SSA) on Thursday, January 19. The topic will be: "Overview of SSA's Disability Programs." She will hear a presentation and then participate in a questions and answers session.

Desiree requests that you send the APF your questions and concern regarding the Social Security Disability. Also, if you applied for disability and were turned down, please tell us about your experience . This is a rare opportunity to have our problems known directly to SSA officials and have our questions answered immediately . We will be soliciting their suggestions, as well.

To make this opportunity more fruitful, your input is very important. Please email your comments and questions or experiences to the Desiree at porphyrus@aol.com or call the APF office at our toll free number 866.APF.3635.
and
REMINDER TO JOIN THE NATIONAL PORPHYRIA REGISTRY

Remember to join the National Registry on the APF website and follow the instructions on the Registry section on the top of the home page or go to

http://rarediseasesnetwork.epi.usf.edu/porphyrias/

There you will find informatjon about the Porphyrias Consortium, which is a team of porphyria experts /researchers who aim to expand knowledge about the porphyrias. The Porphyrias Consortium enables a large scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from the porphyrias

The Porphyria Consortium is conducting a Longitudinal Study on all porphyrias and they need YOU. After joining , one of the research coordinators will contact you to discuss the research project.

All that is needed is your blood and some of your health records, which is not much on your effort to join in the group of other patients willing to devote a little time for such an important research project.
rarediseasesnetwork.epi.usf.edu

1 comment:

Alie Campbell VP

ALIE CAMPBELL PORPHYRIA and ME TYPE OF PORPHYRIA Variegate Porphyria (VP) My story is probably not much different than most. I...