1st International Meeting of Porphyria Patients

October 26 and 27, 2006
Rome, Italy

Click here to see pictures from the meeting.

The novel idea of having an international patients Porphyria conference was inspired by Desiree Lyons from the American Porphyria Foundation and put into action by the Italian Porphyria Association (A.Ma.Po). 

The meeting was well attended by a consortium of approximately 120 patients, caregivers and doctors from all over the world.  There were 15 of us traveling to the conference together from the Americas, 13 from the U.S. and 2 from Brazil.  The two ladies from Brazil, mother and daughter, with the guidance of the APF had recently formed a Brazilian Porphyria Association. 

Prior to the start of the meeting I had an opportunity to ask Dr. Karl Anderson about his previous 4 to 5 year Heme Arginate study.  Dr. Anderson explained he was studying Heme Arginate at the request of and sponsored by a Finnish pharmaceutical company for the purpose of preparing the drug for FDA approval and use in the U.S.  The study ended when the FDA insisted on inspecting the Finnish Pharmaceutical company’s blood bank.  The Finnish government previously had conducted  their own astringent inspection, took exception to the FDA inspection request and refused to allow it.  The company cancelled the study.  Heme Arginate is now Normasong.

The official language of the meeting was English, however, we were all provided with headsets and interpreters for those who gave a presentation in another language.

The meeting began with , Simona Pavia, who gave an introduction of the Italian Association, the intent of the meeting which is to share and exchange information internationally and a plea to not be divided by nations regarding issue of sharing and caring.  She discussed the purpose of their Porphyria Association which correlated with all other countries Porphyria association’s intentions.  She also told of her long struggle to reach a final diagnosis.  A story most of us have lived also.

Simona Pavia

The first morning sessions were dedicated to Porphyria Associations and Desiree discussed the American Porphyria Foundation, its goals and objectives.  Desiree shared her illness and the all so familiar story we all share about misdiagnoses, being considered a problem patient (mental), wrong medications and wrong doctors.

The next patient to speak for the Hungarian Porphyria Association was Regena Meszaros.  She gave an interesting history of Porphyria in her country.  The first patient diagnosed with an acute hepatic Porphyria was 1941, their descendants are Sponsors of the association today.  In 1978 Pan Hematin was used with a lack of state run insurance support, the hospital had to provide it gratis.  In 1989 the first lab capable of assaying for the Porphyrias was instituted and in 1992 the first Porphyria foundation was formed.  In 1998 the hospital administering Pan Hematin gratis became Hungary’s Porphyria Center.  Hungary has limited DNA testing and mostly rely on biochemical testing.  Hungary has 450 acute hepatic patients registered and 25 non-acute.  Of the 450 389 have
AIP, 11 VP, 50 HCP and 25 EPP.   They were using Panhematin, but now use Normasong because it is easier to administer, doesn’t need a shunt.  Their policy on Porphyria and pregnancy is to advise waiting 2 years after the acute phase, however, they’ve documented 3 unplanned pregnancies during the acute phase and everything was okay.

Regina Meszaros

Next up was John Chamberlayne from the British Porphyria Association who quoted 290 documented Porphyria patients; 10% with PCT, 46% with AIP, 24% with VP, 15% with EPP and 5% with HCP, etc.    They currently have 4 Porphyria centers for biochemical testing and one DNA center.  As in the U.S. DNA testing is available for patients and families after positive biochemical testing.  John discussed what their association does for the Porphyria community.

John Chamberlayne

Renza Galluppi was the last ‘Voice of Associations’ speech.  She was the chairperson for the conference and the President of Italian Federation for Rare Disorders which is part of the European Federation of Patients with rare disorders.  She emphasized the importance of forming Associations for the benefit of improving patient’s quality of life.   By forming associations and joining together as a European federation a more powerful lobby is created, able to spread more information about rare disorders, provide training courses for GP’s and basically bring awareness via press campaigns, direct contact and provide data bases to advance research and development.

Renza Galluppi