Probably Genetic growth playbook

With each group's written permission, publish a partners page: logo, the conditions they serve, one sentence on what the partnership offers their members (for example no-cost counseling or a sponsored testing program), and a link to the group. Give each partner its own tracked entry link to the assessment so the group can share it in newsletters and online groups, and so the team can see which communities families come from. Every line of program wording goes through clinical and compliance review before it is published; the page describes the partnership, not medical outcomes.

Families trust the group they already belong to; naming partners turns that trust into a reason to start the assessment, gives every partner something to link to, and makes the 50+ figure checkable for new groups and biopharma buyers.

[ ] Written permission from the group
[ ] Logo and name as the group wants them
[ ] Conditions the group serves
[ ] One sentence on what the partnership offers
[ ] Link to the group's site
[ ] Tracked assessment link for the group
[ ] Clinical and compliance sign-off
[ ] Sharing kit sent

• Some groups do not want to be listed

  List only groups that approve; the page can grow over time.

• Wording implies endorsement of results

  Compliance signs off every entry; describe the partnership only.

• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Competitor researchRivals' own homepages: Citizen Health, "Built for rare disease patients and caregivers. Trusted by 100+ patient advocacy groups"; Sano Genetics, a precision medicine platform that "de-risks trials" for clinical operations teams; GeneDx, "advanced genetic testing" with "the world's largest rare disease dataset".See the research Source
• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source
• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source

Change the link in the shared navbar component to /blog, then click through the menu on a few page types to confirm.

The blog is where caregivers who are still researching learn to trust the company, and it is one click away.

• None worth noting

  Quick reversible change.

• Your websiteNavigation on every page checked (homepage, About, For Partners, sponsored programs, program pages): the "Blog" menu link points to "/" (the homepage), not to /blog, where 53 posts live.Source
• Your websiteBlog (53 posts): condition guides (SYNGAP1, WHIM, CTX, FTD, von Willebrand, Angelman), insurance guides ("does insurance cover genetic testing in 2025"), family stories, and clinician pieces such as "when to refer primary care genetic testing" and a WHIM guide for nurse practitioners and physician assistants. There is a /physician-referral page.Source

Replace the placeholder stats with real, approved figures or delete them; decide which of the two partner pages is the main one and redirect the other; add the one published pharma program as a short case study.

Biopharma deals are large and diligence-heavy; small signs of neglect cost trust in a data business.

• Claims need substantiation

  Publish only figures compliance can support.

• Your websiteSponsored-programs page for drug developers ("Find undiagnosed rare disease patients faster"): next to "55% Superior diagnostic yield" its stats row still shows template placeholder text, "12% Varius enim in eros elementum tristique." and "85% Elementum tristique. Lorem ipsum dolor." It cites one partnership, "helping a public drug developer find ultra rare mitochondrial disease patients". A second partner page, /partnership-finding-patients, is the one linked as "For Partners" and says "Partnering with small biotech to top-20 pharma companies" and "10+ Therapeutic areas".Source
• HiringSenior Product Manager (San Francisco, posted September 21, 2026): will "Lead a new product line end to end" whose primary users are "biopharma customers, R&D organizations", own "the full post-sale relationship for key biopharma and R&D accounts", and work on "renewal planning, and expansion opportunities across the biopharma, R&D and insurance portfolio".Source
• Competitor researchRivals' own homepages: Citizen Health, "Built for rare disease patients and caregivers. Trusted by 100+ patient advocacy groups"; Sano Genetics, a precision medicine platform that "de-risks trials" for clinical operations teams; GeneDx, "advanced genetic testing" with "the world's largest rare disease dataset".See the research Source

Agree one current figure, store it in one Webflow field used everywhere, and give each program page a title and description that name the program and partner.

Consistent, specific pages read as maintained and trustworthy, which matters most in healthcare.

• Count definitions differ

  Define "patients" once (profiles created).

• Your websitePatient counts differ: the homepage and SYNGAP1 program page say "200,000+ Patients", while the Caregiver Action Network program page says "100,000+ Patients" and its meta description begins "100 000+ patients have created a profile". That page's browser title is "Insurance-billed Testing".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source
• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source

Generate titles and descriptions from the condition name ("Genetic testing for [condition] | Probably Genetic"), remove noindex pages from the sitemap, and merge the duplicate slugs. Have every template sentence reviewed once by clinical and compliance review, since it repeats on 607 pages.

A family sharing a page in a support group should see the condition and the company, not a placeholder; ad platforms also judge landing page quality.

• Breaking ad links

  Redirect merged slugs.

• Your websiteSitemap (checked October 22, 2026): 703 URLs, of which 607 are /lp/ condition landing pages. A random sample of ten all have the browser title "Probably_Genetic_Website", no meta description and a noindex tag, yet they are listed in the sitemap. Near-duplicate slugs exist, such as alstrom-syndrome and alstr-m-syndrome, and 22q11-2-deletion-syndrome and 22q112-deletion-syndrome; other pages include /pediatric-seizures-copy and /thank-you.Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Google PageSpeedHomepage: mobile lab score 59 with an 8.7-second Largest Contentful Paint on the hero image, but real Chrome visitors pass Core Web Vitals (LCP about 1.5-1.7 s, INP 83 ms, CLS 0).Source

Build one programs page with each program's status (open, waitlist, closed), the partner group, and who may be eligible in plain terms; link it from the footer and menu. Close or redirect pages for programs that have ended.

Clear status saves families from applying to closed programs and gives advocacy groups one link to share.

• Programs fill quickly

  Show "waitlist" and offer the insurance-billed path.

• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source

After a caregiver completes a profile, offer a simple "share with another family" message and link they can post or send, with no health information included. Any incentive or compensation is designed with compliance first. Track assessments from shared links.

Peer recommendation is the most trusted channel in rare disease communities and costs far less than paid media.

• Sharing exposes private situations

  Messages never mention the sender's condition.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source

Co-host a monthly online Q&A with one advocacy group and a genetic counselor on how testing and insurance work, with no individual medical advice. Record it for the group's members, with consent rules agreed in advance.

Live answers from a counselor build trust faster than pages, and the host group brings the audience.

• Individual questions in public

  Moderator redirects to private appointments.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source

Measure drop-off by question; move the questions with the most drop-off later; let people save and come back by email link; test a short first step that sets up the profile before the detailed history.

Every completed assessment is a family who might get answers; small gains at the start compound.

• Lower data quality

  Track completeness as well as completion.

• HiringSenior Data Scientist (San Francisco, posted October 14, 2026): will "Optimize our patient intake experience using NLP and multimodal data analysis to determine which questions to ask, in what order, to maximize data quality and conversion", and run "prospective testing experiments". Every post describes the company: "Our technology discovers undiagnosed patients online, analyzes their disease state using machine learning and at-home testing, and enables compliant communication with patients", backed by "Threshold, Khosla, and Y Combinator".Source
• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source

Translate the homepage, FAQ and programs page with professional medical translators, offer the assessment in Spanish, route to Spanish-speaking counselors where available, and partner with Spanish-speaking advocacy groups.

An underserved group in an underserved field; trusted Spanish materials stand out.

• Counselor language capacity

  Confirm availability with the counseling partner first.

• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source

Replace each placeholder with two or three links chosen with the partner group (their family resources, support groups, events), or remove the dropdown. Do this on every program page template.

Families get support beyond testing, and partners get visible credit, which strengthens the relationship.

• Links go stale

  Quarterly link check.

• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source

Package a one-page clinician guide (how referral works, what the family receives, how insurance-billed testing works), share it through partner groups' medical advisors, and track referrals by source. All clinician material goes through clinical review.

A clinician referral carries authority with families and brings patients earlier.

• Clinician time is scarce

  Keep the guide to one page.

• Your websiteBlog (53 posts): condition guides (SYNGAP1, WHIM, CTX, FTD, von Willebrand, Angelman), insurance guides ("does insurance cover genetic testing in 2025"), family stories, and clinician pieces such as "when to refer primary care genetic testing" and a WHIM guide for nurse practitioners and physician assistants. There is a /physician-referral page.Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source

Add a "how did you hear about us" step with partner names, use tracked links for every partner and event, and report completed profiles and cost per profile by community and channel each month.

Without community-level numbers, paid media gets the budget by default.

• Self-reported sources are noisy

  Combine with tracked links.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source
• HiringSenior Data Scientist (San Francisco, posted October 14, 2026): will "Optimize our patient intake experience using NLP and multimodal data analysis to determine which questions to ask, in what order, to maximize data quality and conversion", and run "prospective testing experiments". Every post describes the company: "Our technology discovers undiagnosed patients online, analyzes their disease state using machine learning and at-home testing, and enables compliant communication with patients", backed by "Threshold, Khosla, and Y Combinator".Source

Serve a smaller, compressed hero image for mobile, preload it, and check the landing page templates used in ads the same way.

A faster first screen keeps more of the families who tap an ad.

• Image quality

  Check on real devices.

• Google PageSpeedHomepage: mobile lab score 59 with an 8.7-second Largest Contentful Paint on the hero image, but real Chrome visitors pass Core Web Vitals (LCP about 1.5-1.7 s, INP 83 ms, CLS 0).Source
• Your websiteSitemap (checked October 22, 2026): 703 URLs, of which 607 are /lp/ condition landing pages. A random sample of ten all have the browser title "Probably_Genetic_Website", no meta description and a noindex tag, yet they are listed in the sitemap. Near-duplicate slugs exist, such as alstrom-syndrome and alstr-m-syndrome, and 22q11-2-deletion-syndrome and 22q112-deletion-syndrome; other pages include /pediatric-seizures-copy and /thank-you.Source

Write three anonymised program summaries with sponsor approval (therapeutic area, timeline, profiles, tests completed, counseling delivered), with no individual patient information. Use them on the partner page and in sales.

Proof from comparable programs shortens biopharma sales cycles and supports renewals.

• Sponsors decline

  Use fully anonymised summaries.

• HiringSenior Product Manager (San Francisco, posted September 21, 2026): will "Lead a new product line end to end" whose primary users are "biopharma customers, R&D organizations", own "the full post-sale relationship for key biopharma and R&D accounts", and work on "renewal planning, and expansion opportunities across the biopharma, R&D and insurance portfolio".Source
• Your websiteSponsored-programs page for drug developers ("Find undiagnosed rare disease patients faster"): next to "55% Superior diagnostic yield" its stats row still shows template placeholder text, "12% Varius enim in eros elementum tristique." and "85% Elementum tristique. Lorem ipsum dolor." It cites one partnership, "helping a public drug developer find ultra rare mitochondrial disease patients". A second partner page, /partnership-finding-patients, is the one linked as "For Partners" and says "Partnering with small biotech to top-20 pharma companies" and "10+ Therapeutic areas".Source
• Competitor researchRivals' own homepages: Citizen Health, "Built for rare disease patients and caregivers. Trusted by 100+ patient advocacy groups"; Sano Genetics, a precision medicine platform that "de-risks trials" for clinical operations teams; GeneDx, "advanced genetic testing" with "the world's largest rare disease dataset".See the research Source

Host a free calendar where partner groups post their events (family conferences, webinars, fundraisers), searchable by condition. Probably Genetic attends or supports selected events and offers information sessions.

Being the place families find their community makes Probably Genetic the natural first stop for testing questions.

• Moderation workload

  Only verified groups post.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source
• Competitor researchRivals' own homepages: Citizen Health, "Built for rare disease patients and caregivers. Trusted by 100+ patient advocacy groups"; Sano Genetics, a precision medicine platform that "de-risks trials" for clinical operations teams; GeneDx, "advanced genetic testing" with "the world's largest rare disease dataset".See the research Source

Recruit a small group of caregiver ambassadors who share their own experience (with consent and training), moderate online groups and speak at events. Compliance sets rules for what they may say; ambassadors never give medical advice.

Authentic peer voices reach isolated families that ads cannot.

• Overpromising

  Training and approved talking points.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source

Build a clear journey for waitlisted families: status updates, an explanation of the insurance-billed option and counseling, community resources from partners, and notice when new programs open. Wording reviewed by clinical and compliance review.

Keeping waiting families informed preserves trust and fills new programs quickly.

• Too many messages

  Monthly maximum.

• Your websiteHow it works (homepage FAQ): free testing programs "address specific conditions, informed by collaborative efforts with patient advocacy groups, researchers, and pharmaceutical developers", with "a very limited number of tests available at a time"; assessments "are typically reviewed in a week or less"; patients may be offered insurance-billed testing "while they wait on free testing opportunities", starting with a remote genetic counselor through the telehealth partner Genome Medical. Condition landing pages say "more than 90% of families pay $0 out of pocket for testing".Source
• Your websiteProgram pages under /diseases/ (15 in the sitemap, including SYNGAP1, WHIM syndrome, primary ciliary dyskinesia, CTX, Danon disease, von Willebrand disease and the Caregiver Action Network, plus one Spanish page for the Caregiver Action Network program). The footer's "Active Programs" lists insurance-billed testing and three conditions. On the SYNGAP1 and Caregiver Action Network pages the "Understanding..." section has an empty dropdown whose items read "Link 1", "Link 2" and "Link 3".Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source

Build a lightweight kit (banner, printed guide on how testing and insurance work, tablet for profile sign-up later by email) that partner groups can use, staffed by Probably Genetic where possible.

Presence at the group's own event signals commitment to that community.

• Privacy at events

  No health data collected on site.

• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteHomepage (checked October 22, 2026): "The diagnostic odyssey ends here."; "200,000+ Patients"; "50+ Patient Advocacy Partners: We're partnered with over 50 patient advocacy groups to help connect patients with support & community." Testing is "Physician-ordered, with a genetic counseling appointment to go over results", in a "CLIA-Certified & CAP-accredited lab". No page on the site lists the advocacy partners by name; individual program pages mention one partner each, such as the Caregiver Action Network.Source

Each month, offer partners a short reviewed piece (for example how insurance-billed testing works), with their tracked link, ready to paste.

It fills a real need for small groups and reaches members in a trusted inbox.

• Partners edit the content

  Approve their changes before use.

• Your websiteBlog (53 posts): condition guides (SYNGAP1, WHIM, CTX, FTD, von Willebrand, Angelman), insurance guides ("does insurance cover genetic testing in 2025"), family stories, and clinician pieces such as "when to refer primary care genetic testing" and a WHIM guide for nurse practitioners and physician assistants. There is a /physician-referral page.Source
• HiringHead of Community Marketing (San Francisco, posted September 10, 2026): will "build and lead our community marketing strategy for the patients, families, and caregivers of the rare disease population we serve" and "turn a scattered, often isolated population into an engaged community, and turn that community into a growth engine"; will "Build and own relationships with patient advocacy groups (PAGs) and foundations across hundreds of rare diseases", test "referral and email outreach, PAG partnerships and sponsorships, events, participant compensation, and paid media", and "Track how community efforts influence key metrics, including patient acquisition and CAC". The role asks for "Genuine empathy for engaging a sensitive, high-stakes population".Source
• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source

Host the careers page on probablygenetic.com with the open roles from the job board and a short mission section, and redirect the old address.

A consistent home strengthens trust for every audience.

• None worth noting

  Simple change.

• Your websiteCalls to action across the site go to the assessment at chat.probablygenetic.com, with tracking parameters (utm and a pgid value) on the homepage buttons; homepage entry points are "Share a diagnosis", "Share a hereditary risk", "Share unexplained symptoms" and "I don't know where to start". Careers are hosted on a separate netlify.app address.Source
• HiringSenior Data Scientist (San Francisco, posted October 14, 2026): will "Optimize our patient intake experience using NLP and multimodal data analysis to determine which questions to ask, in what order, to maximize data quality and conversion", and run "prospective testing experiments". Every post describes the company: "Our technology discovers undiagnosed patients online, analyzes their disease state using machine learning and at-home testing, and enables compliant communication with patients", backed by "Threshold, Khosla, and Y Combinator".Source