Please sign this petition to support Zahra to get a discount from Biogen company for her medicine
Frequently Asked Questions
Unfortunately, the company does not sell the pack of ampules separately. Zahra must be admitted to a hospital (outside Iran) in a country where the medication is approved and has passed regulations.
Individuals in this campaign have tried to contact celebrities. We always appreciate when you take the initiative and contact celebrities to donate and/or spread the word.
A. You can proceed in following processes to put pressure in Biogen :
- Please sign the bellow petition to help Zahra and all other kids needing SMA: change.org/zahra
- Please go to Biogen’s Facebook page and leave a comment on this post? You could say:”I am one of the 221,000 individuals who has signed Zahra Dehghanipour’s petition, a 6-year-old child diagnosed with SMA. Without SPINRAZA, Zahra will die. Please do the right thing and provide her with compassionate use of SPINRAZA.”
Let’s flood their Facebook page with comments.
- Please send an email to Public.firstname.lastname@example.org and ask them to help Zahra. You could say:”I am one of the 167,000 individuals who has signed a petition on Change.org to save Zahra Dehghanipour, a 6-year-old child diagnosed with SMA. Without SPINRAZA, Zahra will die. Please do the right thing and provide her with compassionate use of SPINRAZA.”
There is a telegram page and account number for people inside Iran.
Telegram : @SaveZahraD
The majority of clinical trials have an age limit that Zahra does not meet. We have already contacted them with no success. For drugs other than Spinraza, either the drug is not available to market yet or there is some limiting factor that deems Zahra is unqualified in the clinical trial.
The medication for SMA, Spinraza, is the most expensive medication of the century and there is only one company providing it. We are in contact with the company to negotiate a discount, if possible.
Not at the moment. The ministry of health in Iran has not approved the medication and the company has no contract with Iran. The medication requires a very intricate method of implementation in a hospital recognized by the company and allowed to use the drug by the government.
Spinraza has been just recently been released for word-wide use and there have been several cases with very promising outcomes. If you are interested in the outcome, please search YouTube for Spinraza results and success stories. We hope with your help, Zahra will be another case of success.