Policy for External Use

Policy for external use

HOW TO ACCESS FONDAZIONE TELETHON ECONOMIC SUPPORT

The Just like home Program

• Fondazione Telethon Foundation has launched in 2016 “Just like home” program (“Come a casa” in Italian).

With Strimvelis, after years of investments, Fondazione Telethon has finally achieved the first important result toward the accomplishment of its mission: find a cure for genetic rare disease.

• With “Just like home” program, a multidisciplinary staff of FT works to facilitate access to this therapy by helping to reduce - where needed and possible - any obstacles (i.e., logistic, emotional, cultural, legal, economic, etc).

Which costs can be supported by FondazioneTelethon?

• Fondazione Telethon may, in some cases and where needed, refund some costs (such as travel, food and lodging in Milan) to patients treated with gene therapy, and those treated under Hospital Exemption, Compassionate Use, or Name Patient Program.

• Financial support will be given to the families that apply, if they are able to prove they cannot afford to cover travel expenses, and/or room and board costs.

• It is important that each family has checked that there are no other financial supports available (such as, insurance, State reimbursement, non-profit organization). FTwill provide support to go through those other opportunities

How do families apply forfinancial support?

• Italians need to present “ISEE”, while foreigners need to fill out the document: "Self-certification regarding the family financial status". All applicants assume the full responsibility for the veracity and accuracy of the information provided in the self-declaration, and commit to provide –if asked - documents proving the legitimacyof what was declared.

• Fondazione Telethon reserves the right to verify legitimacy on all information submitted. Such power can be exercised towards the applicant or any other authority.

What are the different levels of Financial Support?

FThas identified four Reimbursement Levels (1. maximum coverage; 2. medium coverage, 3. basic coverage, 4. no coverage), according to each family financial status.

More details are available for patients aspiring to theProgram economic support

How are decision taken?

In case the family appliesto get financial support for accommodation, FT has the right to choose the place and the family has to complyto this choice. In addition, FT only has a limited availability of apartments, so if they exceed this threshold, families can no more benefit from this support.

The decision regarding the level of financial support is taken internally by FT.

Privacy

All information contained in the declaration will be treated by FTas confidential, andused only and exclusively for the purpose for which they were transmitted, and possibly to check theirveracity.

FTreserve the right to undertake any action that may be deemed appropriate (including legal action), in case of false declaration.