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	This page is intended to share with you our knowledge of congenital atransferrinemia. We let you know about steps that we have taken in order to have apotransferrin available. Maybe it will help any other people with the same kind of problems. If you are in a situation like ours, you must bear our advice in mind "People are willing to help, you just have to say how and when"

	01.12.06	Grifols managers say to Spanish health authorities that seguiran intentando producir apotransferrina a pesar de que hasta hoy no lo han hecho.
	01.12.06	Our apotransferrin batch stability tests shows that we could have medicine enough till 2010.
	01.08.06	In 2006 and thanks to apotransferrin Violet's clinical values have returned to normality:ferritina under 200 and hemoglobine up to 12. Only transferrin levels are the indicators that Violet is sufering a disease (Around 35)
	03.03.05	Finnish Red Cross tells us that a 60 apotransferrin grams batch will be sent to our hospital by the end of the month. Finnally, Blood Transfusion Service managers and employees have solved legal an production difficulties, and their personal effort has made real having medicine for three years more.
	01.03.05	The third and fourth apotransferrin grams also shown its effectiveness: Hb over 13, ferritin decreasing around 800, and hepatic enzymes within normal values. Violet’s health is excellent.
	08.11.04	The Finnish Red Cross only can supply with 25 bottles with expiry date April 05. They could manufacture a new finished drug batch but there are some problems with the aseptic filling.
	14.10.04	As a consequence of the cooperation agreement between Sanquin and the Finnish Red Cross no more apotransferrin will be produced in Finland.
	23.09.04	One apotransferrin gram has shown its effectiveness: Violet Hb raises to 12,3, Ferritin levels decrease to 1109 and hepatic enzymes have returned to normality. Despite it, the Finnish Red Cross will not produce apotransferrin anymore. Probitas Pharma could be the last chance in order to have apotransferrin
	03.08.04	Violet receives her first apotransferrin transfusion. We will see its effectiveness the next september with new blood tests
	08.07.04	The ferritin level and a magnetic ressonance suggest that we should start with a chelation treatment with deferoxamine. We will wait until september.
	05.07.04	After three weeks, Probitas Pharma managers are still studying if it is possible having apotransferrin available
	09.06.04	Meeting with Probitas Pharma. We want them to help us in having apotransferrin from april 2006 on. The meeting was attended by doctors from the Hospital and the Blood Transfusion Service, and by Probitas Pharma managers. Probitas Pharma managers told us that they would study if it is possible having apotransferrin from april 2006 on.
	06.06.04	We have had another phone call. The Spanish Ministry of Health does not foresee any problems in giving special apotransferrin production permits in the frame of a single patient and a compassionate use treatment.
	04.06.04	We have been infomed that Doctor Beutler (Scripps Institute, La Jolla, CA, USA) has accepted doing a genetic analysis. We had not found anyone neither in Spain nor in the European Union who was able to give us genetic counselling. Just to check if it is an autosomic recessive trait...
	03.06.04	Blood test: Bad News. Slight hemoglobin decrease to 10.1, ferritin jumps to 1.331, and transferrin increases to 12.5. Thanks God the apotransferrin is in the hospital.
	26.05.04	We are informed by the Hospital that the Apotransferrin has arrived in the warehouse.
	21.5.04	The Spanish Ambassy in Helsinki informs us that we will have the apotransferrin available in Barcelona the next week . We are specially grateful to the Ambassy support and the commitment.
	17.05.04	The Probitas Pharma President answers: A general manager will meet us, we needn't to worry about the manufacturing costs, but there could be some legal and technical difficulties. He says that in our case, as in others in the past, Probitas Pharma is willing to help.
	13.05.04	Blood test: Good News. Hemoglobin recovers to 10.3.
	10.05.04	We send an e-mail to the Probitas Pharma President. We explain our situation and we tell him that we want to arrange a meeting. We also contact people in order to have the Apotransferrin available as soon as possible.
	07.05.04	We are informed that due to some product labelling problems in Finland there will be a delay in the Apotransferrin delivery. They say that we will receive the apotransferrin in August.
	06.05.04	After speaking with Spanish Medical Agency, we get the Apotransferrin import permits.
	05.05.04	We get an e-mail coming from Japan. It says that Aventis produced Apotransferrin in the past for M.D. Hayashi patients. No Apotransferrin is available in Japan. Mr Hayashi, as a world specialist in the disease, is willing to help us. We are specially grateful to all the Sanofi Synthelabo network who sent and answered to a "health help".
	01.05.04	We are informed by the Hospital that there are some problems with the apotransferrin import permits.
	12.04.04	We start talking with some politicians and Health Authorities. All of them are understanding and willing to help.
	04.04.04	Sunday night. A buddy calls us and she says that Probitas Pharma has a world patent for producing Apotransferrin since it bought the Alpha Therapeutic Corporation assets.
	01.04.04	We were willing to meet doctors and patients who had been in touch with the disease. This day we got an e-mail coming from the Mayo Clinic saying that one of the disease specialists, MD Virgil Fairbanks, cannot help us since he is retired.
	28.03.04	We decide that Violet's disease will not be a secret. We will ask for as much support as we can so as to get Apotransferrin. We also see that not much is known about the disease and that a medical solution is not clear: Violet will attend some message "treatment" (shiatsu, reflexology, reiki...) It may not be helpful but it is sure that it will not be harmful.
	26.03.04	We are informed by the Vall Hebron Hospital Onco-Hematology Service that our daughter Violet has an extraordinarily uncommon disease: Congenital Atransferrinemia. They say that we should sign the consent for a compassionate use treatment with Apotransferrin. They say that the last apotransferrin stock has been found in Finland, and despite having enough medicine, its sell pass date is April 06. They say that Finland will not produce Apotransferrin anymore. They say that we should not worry because producing Apotransferrin has not many technical difficulties.Everything starts today...

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