POISCENTER

General Category => General POIS Discussions => Topic started by: dean93 on November 27, 2017, 11:23:41 PM

Title: Where can we donate to POIS?
Post by: dean93 on November 27, 2017, 11:23:41 PM

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

Title: Re: Where can we donate to POIS?
Post by: Disaster on December 01, 2017, 12:57:32 PM

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

Title: Re: Where can we donate to POIS?
Post by: dean93 on December 01, 2017, 02:10:04 PM

Quote from: Disaster on December 01, 2017, 12:57:32 PM

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

Title: Re: Where can we donate to POIS?
Post by: demografx on March 17, 2018, 01:01:40 PM

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.

Title: Re: Where can we donate to POIS?
Post by: demografx on April 12, 2018, 04:57:50 PM

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

Title: Re: Where can we donate to POIS?
Post by: Rungrawee on April 18, 2018, 02:13:55 AM

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

Title: Re: Where can we donate to POIS?
Post by: fernab on April 18, 2018, 07:27:02 PM

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?

Title: Re: Where can we donate to POIS?
Post by: demografx on April 19, 2018, 06:12:40 AM

Quote from: fernab on April 18, 2018, 07:27:02 PM

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