BVVL International has established a secure BVVL BioBank in order to facilitate research. We are collecting blood and/or cheek swabs from BVVL and Fazio-Londe affected individuals and their immediate family members from around the world and are storing this DNA in a secure, anonymous BioBank for current genetic research as well as for future research for treatment. All collection and shipping is performed at no charge to families, sending the collection kits via FedEx with a pre-paid FedEx return envelope.

Due to the extreme rarity of this syndrome, it is essential to BVVL research to find as many families with the syndrome as possible. If you know someone who has been diagnosed with BVVL or Fazio-Londe and would like information on research progress or to participate in ongoing research, please contact us at info@bvvlinternational.org.