Frequently Asked Questions
Who is Perlara PBC?
What is a PerlQuest?
How does a PerlQuest work?
What is the science behind PerlQuests?
What are the goals of a PerlQuest?
- To partner with families, advocacy groups and BioPharma companies to create more, better and affordable treatments that extend and improve quality of life.
- To accelerate and de-risk drug discovery for a specific rare disease to a point of partnership with a BioPharma company.
- To share the value of intellectual property with all PerlQuest collaborators.
- To share scientific learning with all PerlQuest participants and their communities, as well as the world at large for the greater good.
Who are Perlara’s partners?
How can I start a PerlQuest?
How does my family or organization qualify for a PerlQuest?
What kinds of organizations can start a PerlQuest?
Can other families and organizations join my PerlQuest?
What information or genetic samples are required to start a PerlQuest?
What is a PerlQuest Research Plan?
What is a PerlQuest Collaboration Agreement?
Can I name my PerlQuest?
How much does a PerlQuest cost?
Need help raising money to launch or continue to another PerlQuest phase? Our PerlQuest development team can help brainstorm funding options, as well as you can review fundraising resources at your leisure.
Complete the information form to initiate your PerlQuest.
Who pays for a PerlQuest?
Does my health insurance cover a PerlQuest?
Can I pay for a PerlQuest with my health savings account (HSA) or medical savings account (MSA)?
How can I raise funds for a PerlQuest?
PerlQuests can improve the quality of life for rare disease patients, and potentially, for patients with common diseases like Parkinson’s, Alzheimers and Cancer. An important aspect, distinct from other drug discovery research, is that PerlQuests are funded directly by families and patient groups, who in exchange receive joint ownership of the resulting data and inventions. Consequently, a donation to your PerlQuest now can grow resources to sustain an organization in the future. For prospective partners, the benefit of shared intellectual property (IP) is attractive to signing on .
Fundraise for a PerlQuest as you would for a school, team, nonprofit and other causes. Fundraising activities include major gifts; corporate giving such as matching gifts and sponsorships; special events (galas, silent auctions, walkathons, etc); grantseeking; product sales (t-shirts, garage sales, bake sales, etc); and annual appeals.
Online fundraising has become the norm and can be an effective way of raising funds and awareness about your PerlQuest. If you’re a charitable organization, create a mobile-optimized donation page and promote it to your constituents on Facebook, Twitter, Instagram, Pinterest and other online channels, as well as through offline communications such as donation letters, postcards and flyers. Set up a “Donate Now” call-to-action button for use on your Facebook company page and in linked ads. Reach existing and attract new donors though the power of peer-to-peer fundraising (also known as Crowdfunding). Mobile charitable giving, including text-to-give and mobile friendly email marketing, has proven to be very successful in raising funds for nonprofits.
These articles are chockfull of ideas to rev up your fundraising activities:
Remember that fundraising for your PerlQuest raises awareness about the 1 in 10 families affected by rare disease and the need for research into treatments to improve quality of life.
We are happy to share more fundraising information and support. Simply fill out the PerlQuest form and provide some information about your disease and fundraising activities.
How can my community share in the cost of my PerlQuest?
The number of partners, donors and debtors ranges from one to many. Cost-sharing approaches may require fundraising prior to starting, and in some cases, during a PerlQuest. Crowdfunding, or peer-to-peer fundraising, is ideal for large communities.
Like any financial arrangement, we recommend consulting a lawyer in setting up a community sharing agreement that works for all involved.
Are there grants to support a PerlQuest?
An increasing number of foundations are making grants to collaborative initiatives such as PerlQuests. Reach out to these foundations and share your desire to start a PerlQuest. We are happy to partner with you on grant applications. Simply fill out the PerlQuest form and share some information about your disease and grantseeking activities.
Join our mailing list to keep in the loop about future grants for PerlQuests.
How can I crowdfund a PerlQuest?
Crowdfunding is the process of raising money for a project or venture through a large number of potential backers. It has been used to fund a wide range of ventures including artistic and creative projects, scientific research, medical expenses and community-oriented social enterprises.” PerlQuests are a perfect fit for crowdfunding and will allow your community to rally together to fund much needed research for orphan diseases.
There are different types of crowdfunding that can match your PerlQuest community-ownership structure. The two primary types are Rewards-based and Equity. Donation-based and Debt-based may also be suitable for a PerlQuest.
Crowdfunding is typically done through an online platform, such as Kickstarter, Indiegogo and Crowdfunder, that allows the fundraiser to set up a public campaign for accepting funds. Other sites to explore for your peer-to-peer fundraising campaign are GiveForward, GoFundMe, YouCaring, CrowdRise MedStartr and Experiment. It is best to review and compare crowdfunding sites for the platform that is right for your PerlQuest.
To get some help creating a crowdfunding campaign, fill out the brief PerlQuest form and provide some information about your disease, community and peer-to-peer fundraising goals.
Empower your community to give money to start your PerlQuest now!
What are the phases of a PerlQuest Research Plan?
What is my role as a PerlQuest collaborator?
What happens after a PerlQuest is completed?
How will you provide status updates on my PerlQuest?
When will you provide status updates on my PerlQuest?
How do I communicate with Perlara during a PerlQuest?
Perlara is committed to opening and maintaining channels of communication with rare diseases families, patient advocacy organizations and our partners. We value hearing from you and other PerlQuest collaborators with whatever is on your mind.
Send an email or call the PerlQuest project manager with questions, ideas or information at your leisure. The manager will get back to you within 1 – 2 workdays. If the email address isn’t handy, use our easy contact form or firstname.lastname@example.org. A Twitter mention or direct message to @PerlaraPBC will also get our attention. If you would like to chat with principal investigators, let the project manager know, so that they can get in touch with you directly.
In the future, you’ll be able to set up a private account to communicate about and store information related to your PerlQuest, as well as send inquiries to the PerlQuest project manager and principal investigator. Join our mailing list for progress updates.
How can I follow a PerlQuest?
How can my community follow my PerlQuest?
Who is involved in a PerlQuest?
Who manages a PerlQuest?
How can I invite others to participate in a PerlQuest?
Members of your community can join as co-investors or follow the progress of your PerlQuest. Either way, advocating for a PerlQuest increases the likelihood of improving the lives of your loved ones as well as other rare disease patients.
Inviting others is simple. Call, email, text or reach out to your community through social media channels like Facebook, Twitter, YouTube and Instagram. Use the #PerlQuest hashtag, so that others following the effort can. We can help with outreach, whether it be crafting a joint email, posting to Facebook, Tweeting or pitching an article to the media. Get in touch with the PerlQuest manager or our marketing department to explore partnerships and outreach ideas.
How long will a PerlQuest take?
Where do PerlQuests take place?
We are located at 6000 Shoreline Court, Suite 204, South San Francisco, California 94080.
Perlara just moved from its home of the last three years in the biotech incubator QB3@953 to a newly constructed, 13,000+ sq. ft. lab and office space in South San Francisco, the birthplace of biotechnology. We love our new home!
How can I visit Perlara to see my PerlQuest?
Come on over! We love showing off our world-class scientific equipment and Noah’s Ark of simple animal models (yeast, nematodes, fruit flies and zebrafish). Our scientists are proud to share the latest discoveries.
To set up a lab tour to see the Perlara Drug Discovery Platform, shoot the PerlQuest manager an email. If you’re new to Perlara, fill out the contact form and state your interest and desired dates for a tour. We’ll get back with our availability and tour information.
Want to get a leg up on the tour? Read about the Echo 550 acoustic liquid handling technology used for high throughput screening (HTS), an essential in the process of finding a potential drug candidate.
What legal considerations are involved in a PerlQuest?
Are PerlQuests FDA approved?
No. PerlQuests are rapid, lean drug discovery programs on the path to an FDA approved treatment. To get FDA approval, drug manufacturers must conduct lab, animal, and human clinical testing and submit their data to the FDA.
Who owns the intellectual property (IP) of a PerlQuest?
How is a PerlQuest’s intellectual property (IP) shared between multiple families and organizations participating in a PerlQuest?
How does the 21st Century Cures Act affect PerlQuests?
The Act is a first-of-its-kind, bipartisan bill by Congress that aims to “help modernize and personalize health care, encourage greater innovation, support research and streamline the system,” according to the act’s mission statement. The sweeping biomedical research funding bill accelerates and expands the Precision Medicine Initiative, Patient-Focused Drug Development Initiative, BRAIN Initiative, and the Cancer Moonshot, eases the development and approval of experimental treatments, reforms federal policy on mental health care and unleashes the power of digital medicine and social media at the treatment delivery phase. The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients.
Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD) champions, “The 21st Century Cures Act is a landmark medical innovation package that has the potential to help nearly every American family, including the 1 in 10 Americans with rare diseases who desperately need treatments and cures.”
What privacy controls are in place to insure that my genetic and health information is private?
Is a PerlQuest HIPAA compliant?
How safe is a PerlQuest?
When a potential drug candidate is identified by a PerlQuest, our Perlara Drug Discovery Platform uses a whole model organism approach that increases the likelihood of developing safe, more precise treatments for rare and common diseases.