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November 6, 2013

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November 6, 2013

Global Genes/RARE Project filled a much-needed role in the rare disease community. Previously, many people suffering from rare diseases had no place to turn, until Nicole Boice started this outstanding organization. She has given families hope in many ways: by working with biotech companies to develop better treatments for rare diseases; by advocating in Washington, D.C. to bring awareness and more government funding to rare diseases; and by connecting families with each other so they are no longer alone. Nicole Boice is one-in-a-million and has already made a huge impact with Global Genes. I can't wait to see what she does next for the rare disease community!

Ways to make it better...

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

Make no changes

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

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 16, 2013

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October 16, 2013

Working in the area of rare disease therapeutic research and development, the need to align collaboratively to identify end to end solutions - from drug discovery to reimbursement of new therapeutics- for patients is greatly apparent to truly make transformative changes and accelerate finding cures. Global Genes/RARE Project not only brings patients and patient advocates together, supporting them in finding solutions in the now, but also brings together clinical and industry thought leaders to determine the transformative changes needed to truly make a difference through advocacy, education and research. The team and the community surrounding this organization is unparalleled in its determination and commitment in making a dramatic impact on patient lives.

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

October 14, 2013

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October 14, 2013

For so many in this world who are struggling for answers with a rare disease, the Global Genes Network and RARE Project are the place to connect. This non-profit was founded from first-hand experience of knowing what it's like to desperately want to help someone you love, but having no where to turn for resources. The lack of a centralized information exchange for patients, caregivers, and the medical community needed to be changed, and the founder has done just that with her army of volunteers, advocates, and experts in the medical communities. The success of the Global Genes Network and RARE Project, in such a short time, in making connections that lead to diagnoses, new treatments, and changed lives is immeasurable! You just need one person to care as much as you do when you're struggling with a rare disease, and this non-profit multiplies that one person you need into millions more who care. So grateful!

Ways to make it better...

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

Attempt to find a major corporate partner to help increase awareness of the RARE Project and The Global Genes Network.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

October 14, 2013

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October 14, 2013

I am father to identical twins with a Rare Disease (Niemann Pick Type-C). The Global Genes Project has been invaluable in helping me to better understand how to make progress. From healthcare, to non-profit creation/management, and legislative action, the Global Genes organization has been there for me. As a result, I agreed to join the Board and work to grow this fantastic and much needed role in our community.

Ways to make it better...

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

Find ways to raise it's visibility and funding.

More feedback...

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?

2013

October 11, 2013

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October 11, 2013

As a patient advocate, helping in the rare cancer area, I am impressed with the willingness of the Global Gene/RARE project to seek solutions for support and research across the many diseases under this umbrella. As more is know about the genetic sources of diseases, and the changes that occur in cancer due to genetic mutations, there will be greater need and coordination of research. This group will be essential in doing just this. Their ability to work together, as exemplified by the recent conference, is noteworthy.

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

October 11, 2013

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October 11, 2013

The Global Genes Project is an incredibly important organization, without which, many small rare disease organizations and patient advocates would never receive the education they need to make an impact. Besides distributing informational toolkits on things like how to start a non-profit and what sort of patient tools are available out there for patients to use--they provide a place for a community to get involved. Between their website, rare meet-ups, blog and social networks--The Global Genes Project provides both a physical and virtual haven for patients, parents, advocates, and the general public.

At this year's 2nd Annual Tribute to Champions of Hope Gala they raised money specifically to go to families in need of immediate genetic testing to uncover their rare diagnosis and end a horrible, confusing and what can often be VERY expensive journey for families to go through.

They also provide a continuously updated "Rare List" including all of the known rare diseases affecting patients internationally.

Ways to make it better...

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

Hope that they receive even more global awareness about their efforts!

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

October 11, 2013

more

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

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