Research Participants needed!

 

Research Participants needed!

Givosiran Trials

Do you have an acute porphyria? Yes?
We need you to participate in research! Get involved TODAY!

"Remember.....Research is the key to YOUR cure!"

The phase 3 trials for Givosarin has begun. The purpose of this study is to evaluate the use of this medication to prevent or reduce attacks and symptoms in those with an acute porphyria (AIP, HCP, VP, ADP). If you are interested in participating for this exciting new trial, call Edrin at the APF 713.266.9617 or 1.866.APF.3635

 

Light the Moment 2018

EPP kids ages 5-17 years old Enter to win an ALL expenses paid trip to Walt Disney World in Orlando, Florida

Some of the best moments we can have in our lives tend to come on vacation. We go to places we otherwise would of never gone to, we learn about cultures and traditions that once seemed so foreign and we grow through experiences that later become summed up by in inside jokes, "gotta be there" moments and with the people we took those trips with. And what is more memorable than those classic family trips with the family? The ones that live on in old photos, admired for the absurd fashion choice of the decade and those classic tales of who got sick at the worst time, who was "unamused by the Grand Canyon", and so on. It is our belief that a vacation, more so a family vacation.

• Application•

♦ Read More about Light the Moment 2018 ♦

 

 

FREE Genetic Testing!

You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if they carry a mutation in a gene associated with a predisposition for acute porphyria. This opportunity can shorten the time to diagnosis and prevent misdiagnosis.

How does it work?

  • Results are then reported to your physician ONLY (No other organization will receive any identifiable information regarding a patient or their results)

Who is eligible?

  • Patients must be 16 to 55 years old
  • Patients must meet eligibility from at least one of the following criteria:

Elevated Urinary Porphobilinogen (PBG)

                     OR

Unexplained recurrent (more than one), prolonged (>24 hours) episodes of severe, diffuse abdominal pain AND at least 2 of the following:

Red to brownish urine, OR

Known or suspected family history of an acute hepatic porphyria, OR

Blistering skin lesions on sun-exposed areas, OR

Peripheral nervous system manifestations occurring around the time of abdominal pain (i.e. motor neuropathy (paresis), sensory neuropathy (numbness, tingling, limb pain), OR

Central nervous system manifestations occurring around the time of abdominal pain (i.e. confusion, anxiety, seizures, hallucinations), OR

Autonomic nervous system manifestations occurring around the time of abdominal pain (i.e. hyponatremia, tachycardia, hypertension, nausea and vomiting, constipation)

This program was developed to reduce barriers to genetic testing and counseling and to help people make more informed decisions about their health.

Contact the APF on 1-866-APF-3635 or 713-APF-3635 to guide you through the process.



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