Exome Opportunities

Current Exome Opportunities as of March 21, 2016:

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Donated 5 Free Whole Exome Sequencing Tests to SWAN USA members.

TERMS AND CONDITIONS

SWAN USA MISSION: We are a non-profit tax exempt 501(c)3 organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.

ELIGIBILTY: Applicants shall be children or adults that have an undiagnosed syndrome and can show a history of attempts in obtaining a diagnosis.

SHARING YOUR STORY. In our efforts to raise awareness/recognition by the medical community, education system, social services and general public we ask that you allow us to share your story and results. You have the choice to remain anonymous.

DESCRIPTION – Whole Exome Sequencing is currently being offered in collaboration with GeneDx. Through this offer the chosen applicants shall receive the test for free. The applicants will be required to have an ordering physician that will oversee the process of submitting all applicable forms and blood samples to the location providing the test within a reasonable time period. Only one application per person is necessary and you will be able to participate in future opportunities. All applicants that submit a form by Undiagnosed Awareness Day, April 29, 2016 at 12:00pm EST and meet the requirements will be reviewed by SWAN USA board members. If you are a chosen applicant, at that point we will require the necessary verification. You do not need to provide any verification other than the application to apply.

HOW TO APPLY

To fill out the online application form click here. If you prefer, we can mail or fax you a copy of the application.

ACCEPTANCE NOTIFICATION - Chosen applicants shall be notified by mail, email or phone by a SWAN USA board member. The chosen applicants will have 14 days for acceptance or non-acceptance, or the offer shall be forfeited. Upon acceptance, the chosen applicants will have 30 days to send over the required documents. If you are having any problems, SWAN USA will help assist you through this process.

THE FOLLOWING MUST BE PROVIDED BY THE CHOSEN APPLICATIONS:

  1. Letter from the ordering physician stating they will oversee this process and work with the specified lab.

   All sample submission kits and requisition forms will be sent directly to the ordering physician once we receive this letter.    

 LEGAL DISCLOSURE

By submitting an application, you are agreeing to the terms below:

By participating in this program, I acknowledge that I have elected to participate voluntarily. I hereby release SWAN USA (Syndromes Without A Name), its board members, agents and partners from any damage I may suffer as a result of my voluntary participation and I hereby hold harmless SWAN USA (Syndromes Without A Name), its board members, agents and partners from any and all liability as a result of any damage, of whatever nature, I may suffer as a result of my voluntary participation in this exome sequencing offer.

SWAN USA reserves the right, at any time, to cancel, modify or suspend the free offer if, in its sole judgment, the free whole exome sequencing is not capable of being conducted as specified.

SWAN USA reserves the right to alter these Terms and Conditions at any time and in its sole discretion.

GIVE BACK TO THE SWAN USA COMMUNITY We ask that the chosen applicants help pay-it-forward so that other families may benefit from the resources SWAN USA can provide. We understand that families are often faced with many everyday challenges and donating time/money can be a hardship. Below we have listed some ideas and welcome any you have to offer. Here are some suggestions:

  1. Hold a fundraiser that will benefit SWAN USA
  2. Find a donor that is willing to match $1 per like and hold a Facebook Awareness Campaign
  3. Share SWAN USA link on your website, blog, twitter, Facebook or any other social media
  4. Participate in a local health fair representing SWAN USA
  5. Make a cash donation
  6. Offer up a suggestion!

 

More questions? Trying vising our Whole Exome Sequencing FAQ!

 

 

 

 

 

3 thoughts on “Exome Opportunities”

  1. Maxine Simon says:

    I got a email asking if I am still Interested. YES! I desperately need Whole Genome Sequencing. Chronically ill, Not diagnosed Properly to date.

  2. Amber Linzer says:

    My daughter is 13 months FTT, seizures , global Delays
    And hypotonia.. We currently have no diagnosis!

  3. joan e bowe says:

    I have 2 grand daughters that have mitrocondrial disease a daughter that had hodges lymphnoma @ age 36 I have dhea & would love to be tested so I can help My family get closer to a solution to our rare gene disorders

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