Rare Disease Foundation Questionnaire

Please fill out the following form to the best of your ability to allow our team to get to know your foundation, its mission, the rare disease of interest, and the child/patients affected by this rare disorder.

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Main Contact Information

First Name:

Last Name

Email Address:

Email Type:

Disease

If applicable, please tell us the name of your rare disease.

If applicable, please tell us the gene(s) affected.

Epidemiology: How many people are estimated to be impacted by your disease?
(If unknown, please indicate with "unknown".)

Literature (optional)
Please upload what you feel is key literature you have compiled, if any. This can be scientific journal articles, medical news, blog entries from fellow parents, etc. You can add up to 5 files.

File 1

File 2

File 3

File 4

File 5

We understand that some disorders are so rare that literature may be scarce. If one of your goals working with RTW Foundation is finding key literature, please select "I would like assistance compiling literature" below:

I would like assistance compiling literatureN/A

About Your Foundation

What is the name of your foundation?

Foundation Website:

What year was your foundation founded?

Does your foundation have a mission statement?

YesNo

If yes, what is your mission statement?

Tell us about the journey it took to get here.
This may include the patient's diagnosis, important people that helped you get to this point, current state/manifestations, and what you have learned. Be as detailed or succinct as you feel is necessary for an initial introduction. (500 words max)

What are your foundation's long-term goals and what progress have you made towards your foundation's goals?
This may include connecting with other rare disease families, identifying medical or scientific contacts for your disease, developing research materials, funding/grant milestones, and more. (500 words max)

What are the immediate goals you want to achieve through RTW Foundation's Rare Disease Advisory program?
(500 words max)

Questions

Do you have any additional questions or other pieces of information that were not addressed in the questions above?