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Home Page | bvvlinternational.org Reviews
<META>
DESCRIPTION
Check out http://bvvlinternational.org!
<META>
KEYWORDS
1 about us
2 about bvvl
3 research highlights
4 b2 therapy protocol
5 patient resources
6 patient stories
7 christopher
8 pavani
9 kayla
10 your subtitle text
CONTENT
Page content here
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1

Pavani

http://www.bvvlinternational.org/Pavani.html

BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. This is an article about Pavani, who at the time was a beautiful thirteen-year-old girl in Sri Lanka recently diagnosed with BVVL. In Sri Lanka they do not issue portable ventilators, meaning patients like Pavani will have to live the short duration of their precious lives in a hospital.

2

About Us

http://www.bvvlinternational.org/About_Us.html

BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. Brooke Allen, MD. Mountain Neurological Research Center. Basalt, CO, USA. John Bodensteiner, MD. St Joseph's Children's Health Center. Phoenix, Arizona, USA. Dr Annet Bosch, University of Amsterdam, Amsterdam, The Netherlands. Dr Henry Houlden, MRC Centre for Neuromuscular Diseases, UCL Institute of Neurology, Queen Square, London, UK.

3

About BVVL

http://www.bvvlinternational.org/About_BVVL.html

BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. What is Brown-Vialetto-Van Laere syndrome? What is the cause of BVVL? BVVL is now linked to several genes that cause riboflavin transport deficiency. Several researchers continue to study the exact mechanism, including the creation of a mouse model so that we can better understand the exact reason for the disease. Most genes appear to hav...Throu...

4

Kayla

http://www.bvvlinternational.org/Kayla.html

BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. Kayla, on the right, with her Big Sis and cousin. Chris's Mom signing "I love you" to him. With Mom for a Princess Halloween. May 2005, two weeks before symptoms begin.

5

B2 Therapy Protocol

http://www.bvvlinternational.org/B2_Therapy_Protocol.html

BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. Guideline for the diagnosis and the treatment of Riboflavin Transporter Deficiency. Brown- Vialetto - Van Laere /Fazio Londe). If a patient is suspected to have a Riboflavin Transporter Deficiency:. 1 Take blood samples for:. Acylcarnitine profile and plasma flavin measurements. 3 Monitor clinical outcome. Eye exam and retinal/disc photographs.

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What is Riboflavin Transporter Deficiency? Welcome to the Cure RTD (formerly BVVL) website. We are the first UK website set up specifically to provide information, offer support and consolidate information on Riboflavin Transporter Deficiency. If you are visiting this site, then you or a loved one may already be affected by this rare syndrome. We hope to offer you support and some answers to your questions. Perhaps you have a SWAN (syndrome without a name) child and are striving for a diagnosis?

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BVVL WINKEL VASTGOED ADVISEURS

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BVVL International was founded as an aid to anyone interested in uncovering the mystery of Brown-Vialetto-Van Laere syndrome and ultimately,. In finding a cure. On March 4th, 2010, the first article outlining a BVVL gene. Was published. Since that time, other genes have been discovered that elucidate this disease as a riboflavin transporter gene mutation. See the BVVL Research Highlights. Page for more information. On November 26th, 2010, an article outlining a potential therapy. Page for more information.

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