We help children with rare diseases from countries
where insurance or governmental health
assistance programs do not cover the cost of
life-saving treatments.
where insurance or governmental health
assistance programs do not cover the cost of
life-saving treatments.
Our Programs
SMA Program
Spinal muscular atrophy (SMA) is a fatal genetic disease. SMA affects approximately one in every ten thousand babies born each year. If untreated, most of them do not live past two years of age.
One of the leading medicines to treat SMA, Zolgensma (by Novartis), is recognized by the Guinness Book of World Records as the most expensive medicine in the world ($2.1 million per one injection).
Zolgensma replaces the function of the missing or non-working SMN1 gene with a new working copy of the human SMN1gene. In essence, it halts the disease at its root.
Zolgensma's accessibility is extremely low due to its astronomically high cost. Today, in many parts of the world, hundreds of SMA-afflicted children cannot receive the gene-based therapy they desperately need to survive.
The "Birds for Sofia" helps families when the need for commercial purchase of Zolgensma is demonstrated and the child meets the prescription criteria. Ex: neurologist's recommendation with denied insurance or absence of governmental support.
One of the leading medicines to treat SMA, Zolgensma (by Novartis), is recognized by the Guinness Book of World Records as the most expensive medicine in the world ($2.1 million per one injection).
Zolgensma replaces the function of the missing or non-working SMN1 gene with a new working copy of the human SMN1gene. In essence, it halts the disease at its root.
Zolgensma's accessibility is extremely low due to its astronomically high cost. Today, in many parts of the world, hundreds of SMA-afflicted children cannot receive the gene-based therapy they desperately need to survive.
The "Birds for Sofia" helps families when the need for commercial purchase of Zolgensma is demonstrated and the child meets the prescription criteria. Ex: neurologist's recommendation with denied insurance or absence of governmental support.
Unbiased Inheritable Disease Program
We help children born with rare, less-known diseases. We help primarily with medical bills that are not covered by insurance.
To apply to the Unbiased Inheritable Disease Program the child requires to have a diagnosis. We help with treatments approved by the Food and Drugs Administration (FDA) or equivalent regulatory organizations in other countries.
To apply to the Unbiased Inheritable Disease Program the child requires to have a diagnosis. We help with treatments approved by the Food and Drugs Administration (FDA) or equivalent regulatory organizations in other countries.
Personal Grants to The Families in Need from Ukraine
It is a pilot program to support families with rare diseases from Ukraine. Today, we are focusing all our efforts on Ukrainian children who got caught in the devastation and horror of Vladimir Putin's war.
This program will help to purchase the medical equipment and medications crucial for life, we also cover genetic testing, rehabilitation, and other medical needs when the invoice is provided.
Help Birds for Sofia to make a real difference for these children.
Let's stand together in kindness against the darkness and pain of war.
Let's send the Birds of Hope to those who need them most!
To apply to our program, families can fill out the form birdsforsofia.org/application
This program will help to purchase the medical equipment and medications crucial for life, we also cover genetic testing, rehabilitation, and other medical needs when the invoice is provided.
Help Birds for Sofia to make a real difference for these children.
Let's stand together in kindness against the darkness and pain of war.
Let's send the Birds of Hope to those who need them most!
To apply to our program, families can fill out the form birdsforsofia.org/application
Medical resettlement program for Ukrainian refugees in the USA
BFS helps 5 Ukrainian refugee families with children with rare diseases to resettle in the USA and get access to medical treatments and rehabilitation. This program is designed for the "Uniting for Ukraine" parolees only. We highly encourage families to find a sponsor before applying to this program. At this point, we are no longer accepting new cases.
