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October 27, 2013

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October 27, 2013

Global Genes plays a very important role in the rare disease advocacy space. While most organizations are focused on specific diseases, Global Genes is focused on supporting all of those advocacy groups, empowering them to better serve their own missions, as well as increasing awareness about rare disease in the public.

The leadership has a visionary as well as a capable, experienced executive team.

They are highly respected in the healthcare industry and have made a tremendous impact in the relatively short time they've been in existence. I strongly recommend this organization.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 21, 2013

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October 21, 2013

I am in awe of this organization and its dedication to those suffering from rare diseases. It's so heartwarming to hear and read the stories of those less fortunate. This organization is all about love!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 16, 2013

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October 16, 2013

I never knew the vast # of people who have a rare disease, until this organization began. With the # of people worldwide, it's really not so "rare". I believe in the tireless work that the group is doing to help advance research in this area, advocate for patients and families, and to celebrate what it means to have a rare disease by bringing the community together. I also love that it started from a true grassroots effort and enjoy seeing it grow.

Ways to make it better...

If I had to make changes to this organization, I would...

Get more resources and money for the group and the patients it serves.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2012

October 11, 2013

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October 11, 2013

As I learn more about the Global Genes charity, I am amazed at the dedication of the people who work for this organization. Their hearts are united in finding cures for the diseases that no one is talking about. It is exciting to see how they are bringing professionals together to find answers for people who had no where to turn.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 10, 2013

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October 10, 2013


As a volunteer at one of the fundraisers, it was obvious that Global Genes is passionate about the work and research they are doing to find cures for these devastating rare childrens diseases. It was such an eye-opener to see what these children and their families go through. Listening to
the stories of the families was heart-wrenching.

Ways to make it better...

If I had to make changes to this organization, I would...

Find more money to increase their research.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

October 10, 2013

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October 10, 2013

Global Genes is doing incredible work in connecting people who had no where to turn to get help for their child. I have been a volunteer since 2008 and have be amazed at their accomplishments. They have a wonderful staff of caring people, who work very hard to make all this happen. Global Genes has made awareness of diseases that were never heard of as well as the family's struggles. I wish Globel Genes continued success.
To those who want to learn about this nonprofit, just read the stories of these wonderful children, it will touch your heart.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 20, 2013

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September 20, 2013

I have participated with Global Genes in Washington DC for Rare Disease Day twice. They are a wealth of knowledge about Rare Diseases and policy. They share their knowledge with everyone. They are one of the leaders in the Rare Disease community.

More feedback...

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2013

September 16, 2013

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September 16, 2013

This is a RARE non profit that knows its target audience and how to elevate and motivate them. (Like what I did there..get it RARE?) A lot of groups with great intentions attempt to get off the ground and fumble with direction. In the short time I've volunteered with the Global Genes RARE Project after finding support for a rare diagnosis in my own family I learned that the people here are motivated and doers. There is much more action because of all the talk by this group than most any other out there. The leaders are true leaders in the sense they inspire others to do more and be better.

Ways to make it better...

If I had to make changes to this organization, I would...

Expand its reach. Every physician should provide a link to this network to newly or undiagnosed patients. There is still plenty to learn with an old diagnosis too by getting involved with this group.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

Global Genes is a distinguished leader in the rare and genetic disease community. The organization advocates for a multitude of patients, young and old, who suffer with debilitating conditions. As a patient with CADASIL, (a rare genetic neurological disease), I am a voice in the CADASIL community. By also being a member of the Global Genes community (as a committee member, Facebook group participant, blogger, etc), I am learning ways we can all come together to help everyone affected by rare and genetic diseases. As separate disease organizations, we are small. As part of Global Genes, we are huge and our voices are more readily heard. Global Genes is doing amazing things to bring awareness to rare and genetic diseases. I am proud and thankful to be part of the Global Genes community.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 10, 2013

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September 10, 2013

What a great organization! They raise awareness for those who have rare diseases. They provide resources for patients and families to help their causes. Global Genes also helps connect doctors, research scientists and pharmaceutical companies. Together for one cause they promote change & help aide in legislation to raise awareness for rare disease. This is a multifaceted organization that can help with the cause to promote awareness for the 7000 rare diseases of the world.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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