My Nonprofit Reviews

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shozgirl

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4 reviews

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

I am a chordoma patient and remember when there was no Chordoma Foundation. As a rare disease with only 300 diagnosed a year in the US, it was impossible to find anyone else to share with or ask questions. Now we have this amazing organization doing research for a cure, organizing medical conferences, supporting patients in every way imaginable....its like a dream come true. Honestly I dont know what we would do with out them. I am thankful and gratefl every day that they exist and are working on every cylinder.

Role:  Volunteer
 

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

When I was first diagnosed in 2003, there was no Chordoma Foundation. Since their founding, they have been a major force in starting research for a rare disease where nothing was being done. Now we have major trials and hope for new treatments and a cure.

The Chordoma Foundation has also become a huge repository of patient information and guidance, which is critical to saving lives. From a Doctor Directory, to Patient Navigators, to Recommendations based on Medical and Scientific Advisory boards as well as Post Treatment referrals. Anyone with any questions can get them answered through myriad methods available on site.

The Foundation is very responsive to questions, suggestions and we would be lost without them. I am so grateful they exist and are doing such a phenomenal job!

Role:  Client Served
 

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

The Chordoma Foundation came into existence when there was no research for this exceedingly rare disease. No way to reach anyone. Through their efforts we now have many scientists, researchers and doctors working together to advance us towards new treatments. If not a cure...those of us affected by Chordoma are so grateful for not only the science but also the patient outreach. This has grown to help hundreds of patients and family that would otherwise be lost. The Chordoma Foundation is responsive, holds many conferences and over and above anything else- gives us hope. If it were not for them, many of us would not be here. They are saving lives, nothing less.

Role:  Volunteer
 

Review for Chordoma Foundation, Durham, NC, USA

Rating: 5 stars  

The Chordoma Foundation has provided everything a patient or caregiver for this rare disease could wish for. When I was diagnosed there was nothing available and there were very few experts. No attention was being paid to research and finding new treatments and a cure. Since their inception I have seen The Chordoma Foundation grow to be a powerful force - building relationships and momentum which will ultimately lead to a cure, I am sure. There are expert Advisory boards including Medical, Scientific and Community. The website provides all the information one could need for treatment, learning, trials, support, research, questions- you name it. There are yearly conferences where families can go learn the latest and meet the doctors. They are now working worldwide and fostering relationships overseas which is fantastic. For a small population of only 300 US patients diagnosed a year, so much is being done and attention is finally being paid. Thank you to the Chordoma Foundation for giving us HOPE, which is so important. There is really nothing more.

Role:  Volunteer