Patient Advocacy

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Our Impact

●    Supported 500+ patients individually, completed over 120 genetic sequencing and analysis projects

●    Pioneered the movement to empower patients through education, access and coordination of genetics testing/research and patient data ownership

●    Produced the world’s first crowd funded gene discovery for Maya, reported by the WSJ in 2012

●    Assisted patients with funding for over $1,500,000 worth of next generation sequencing

Our Partners

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iHope

Rare Genomics Institute (RG) is happy to partner with leading genetic sequencing laboratory Illumina Inc. (NASDAQ: ILMN) as part of their iHope program, which provides free clinical whole genome sequencing to children affected by rare or undiagnosed diseases. Romina Ortiz, MHS, Co-founder, COO and VP of Patient Advocacy, is leading this operation for Rare Genomics.

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Who is eligible?

Children who are suspected of having a rare or undiagnosed disease, who have two biologic parents who can also provide a blood sample and a physician that recommends the test.

Is there a cost associated? 

There are no costs for the sequencing and interpretation. There may be cost associated with visiting your physician and drawing samples that you will be responsible for.

How long will it take to get results and will they be private?

In an estimated 90 days the results will be sent to your referring physician.

How do I apply? 

Complete our RG application and a member of our Patient Advocacy Team will contact you for next steps to determine eligibility.

Our Team

Romina Ortiz, COO, VP Patient advocacy

Romina Ortiz, COO, VP Patient advocacy

Elizabeth Lotsof, Director of Patient Affairs, Patient Advocate Associate

Elizabeth Lotsof, Director of Patient Affairs, Patient Advocate Associate

Annie Wang, Patient Advocate Associate

Annie Wang, Patient Advocate Associate

Qiuyin Ren, Patient Advocate Associate

Qiuyin Ren, Patient Advocate Associate

Yara Gorashi, Patient Advocate Associate

Yara Gorashi, Patient Advocate Associate

Rosheen Birdie, Patient Advocate Associate

Rosheen Birdie, Patient Advocate Associate

Mina Bakhtiar, Patient Advocate Associate

Mina Bakhtiar, Patient Advocate Associate

Matthew Sharma, Patient Advocate Associate

Matthew Sharma, Patient Advocate Associate

Jennifer Vu, Patient Advocate Associate

Jennifer Vu, Patient Advocate Associate

Why We Do This

“Our experience with RG has been fantastic with a proactive and dedicated team, from when we first communicated 3 years ago, you have never stopped.” - Rebeca Bentolila, Mother

“Now we know, we have solid evidence. It’s not just based off different tests. We have something that is directly related to him and it’s helped him dramatically. Now that we know what is wrong with our daughter, which routes we need to go. Thank you, I can’t say it enough.” - Jonathan Van Brocklin, Father

“Thank you for persistently pushing this genetic testing process along. We have finally got a diagnosis for our son after 9 years of not knowing. Your work truly mattered.” - Janet Wong, Mother