Skip to main content

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

Comments

Popular posts from this blog

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!