HOW YOU CAN HELP US
Let's join forces and make a miracle together. Help our children with funding for research and development of a cure for SPATA5.
We have started this fundraising campaign in order to finance the research being carried out by Czech scientists from the Academy of Sciences of the Czech Republic. We have approached these scientists to help our children. We, the parents, are paying for all the research from our own funds, because there is no budget for research into rare genetic diseases in the Czech Republic.
The current estimate of the cost of research and development of the cure is between
1,3 - 1,9 million EUR.
Bank account for international donors:
IBAN: CZ23 2010 0000 0027 0304 9205
BIC : FIOBCZPPXXX
For donors from Czech Republic : 2703049205 / 2010
If you would like to receive a donation certificate please contact us via email.
THANK YOU FROM THE BOTTOM OF OUR HEARTS!
Let's stay in touch: info@spata5.cz
Official information about the association of parents of children with SPATA5
Organization name: SPATA 5 CZ, z.s.
File number: L 79860 kept at the Municipal Court in Prague
Identification number: 223 28 700
Legal form: association
Purpose: Support for research and development and other activities related to the search for a treatment for EHLMRS syndrome (a severe disability caused by a mutation in the SPATA5 gene) and its application in practice. Support for the development of people diagnosed with EHLMRS and their families, educational activities.
Scope of activity: Securing the financial resources necessary for the implementation of projects fulfilling the purpose of the association, primarily for the support of research, development and medical and therapeutic interventions. Providing advice and support to people with EHLMRS and their family members; implementing educational activities.