Where can we donate to POIS?

[dean93]

Hi all, been a while, some of you know me while to others I am likely an unfamiliar face. In any case, simple question: How can we donate to POIS?

I understand that the original study has been canceled; has there been any other donation site organized?

Thanks in advance

[Disaster]

The original study was refunded. But the guys have started a new page for donations. I think it's one of the pinned posts.

[dean93]

The original study was refunded. But the guys have started a new page for donations. I think it's one of the pinned posts.

Thanks for the reply; I can't seem to find it. Do you happen to have a link? Thanks

[demografx]

dean93, NORD (described below) is not taking further POIS donations at this time. For now we are simply looking for the best way - with NORD’s vetting and supervision - to spend the $31,000 that our wonderful forum members have raised.

Instead of contributing $$$ (but thank you!!!)...you can help by sending our POIS RFP (send link below) to your doctor or favorite medical research team anywhere in the world:
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx


Best
Demo

NORD (National Organization for Rare Disorders)
https://rarediseases.org

NORD is our POISCenter Grant Administrator. Research gives hope to rare disease patients and their families. Since 1989, NORD has administered a Research Program through which we provide grants that have resulted in numerous published advances and at least two FDA-approved therapies.  NORD is also working with rare disease organizations to launch disease-specific registries to support research.

[demografx]

Any questions, please let me know, by posting or private message

[Rungrawee]

I also like the POIS from the same and I'm looking for information.

[fernab]

Today, I asked an inmmunologist if he was interested to receive the RFP. He told me that he was interested.

I sent It to him.

Hope this contributes to spread the Word....

I think, the more POIS is known by doctors, the more possibilities we have as a group to grow up in number of knowing our illness is named POIS. How many persons may be out there having also POIS without knowing It, because doctors don't know anything about POIS symtoms?

[demografx]

Today, I asked an inmmunologist if he was interested to receive the RFP. He told me that he was interested.

I sent It to him.

Hope this contributes to spread the Word....

Thank you, fernab, for your teriffic help in getting our $31,000 RFP into the hands of an immunologist who might be a good candidate to do a research study of POIS!

Any forum member can send this RFP out to researchers:
https://tinyurl.com/y96dnkmq