Rhode Island Rare Disease Foundation
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May 10, 2013
There is nothing easy about having a child with a rare disease. It took years of trying and failing to find someone to help us with our son. Many frustrating days of feeling totally alone and not knowing where to turn to get the help you need. Then one day while shearing the internet i find the RI Rare Disease Foundation. Miss Weltin feels our pain and helps us find the right doctor. I am amazing that after few emails exchange that it leads us to the proper doctor to help my son. words cannot do justice to how i feel about the efforts and understanding we receive from Patty , I only thank god i found her for my son sake. I am so glad there are organizations like RI Rare Disease foundation out there to help people like my family. Thanks a million Patty
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
December 3, 2012
This is an organization with a big heart that provides one-on-one help to families struggling with very difficult issues. RIRDF organized a very successful Rare Disease Day event last year that helped promote awareness of this important global observance on the last day of February. My colleagues and I enjoy working with RIRDF and feel very comfortable about referring patients and families to this excellent organization.
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How does this organization compare with others in the same sector?
Very Well
How much of an impact do you think this organization has?
A lot
Will you recommend this organization to others?
Definitely
When was your last experience with this nonprofit?
2012
October 31, 2012
I am so thankful to have The Rhode Island Rare Disease Foundation fighting for parents of children with rare disease. I know first-hand what is like to fight for answers to unanswered questions. Thank you to The Rhode Island Rare Disease Foundation for taking a stand for Rare Diseases and being a powerful voice for us.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2012
October 31, 2012
The Rhode Island Rare Disease Foundation (RIRDF) is a very special organization in that it helps unite people from all over the world with each other as well as the medical community. In so doing, it becomes not only a source of support for those with rare diseases, but also a network for communicating valuable medical information many may never have discovered otherwise. For the millions of people with rare diseases--statistically, ten percent---the hope is the RIRDF will become a valuable, sought-after resource that will place both knowledge and comfort at the disposal of those needing them most. Indeed, it already has. While only a fledgeling entity, it has to date already begun to unite many, many people in these ways. Chances are either you or someone you know is affected by a rare disease, so please visit www.rirdf.org to learn more about this fanatastic organization.
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Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2012
October 30, 2012
Finally, patients with rare diseases and their families are not alone! The RI Rare Disease Foundation is there to provide support and friendship. While every disease is different, families of children with rare disorders all share common struggles and can now benefit from the experiences of those who have "been there, done that". The friendship and camaraderie among these great families is truly heartwarming. It is an honor and privilege to be associated with this group that gives a voice to those struggling with a rare disorder
More feedback...
Will you volunteer or donate to this organization beyond what is required of advisors?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2012
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