named programs · 3 · from sources
What they call their work
MyHypeLife
Anonymous video storytelling project where real experiences of individuals and families affected by hypospadias are recreated by actors to protect privacy and raise awareness.
Petition for Informed Consent
Advocacy campaign urging urology boards and medical regulators to standardize and improve the informed consent process for hypospadias surgery, emphasizing transparency, parental education, and long-term follow-up.
What to Ask Your Doc
Resource providing parents with a list of questions to evaluate the experience and approach of urologists performing hypospadias repair surgery.
activities · 3 groups
What they do
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Reproductive Health Advocacy & Education 4 activities
- Advocates for extended decision-making periods and second opinions in hypospadias treatmentAdvocates for families to have extended decision-making periods before hypospadias surgery to allow time for consideration of options and access to second opinions.
- Advocates for standardized, comprehensive informed consent for hypospadias surgeryAdvocates for a mandated, comprehensive informed consent process for hypospadias surgery that includes medical, procedural, and experiential information, and has organized petitions to promote transparency and better decision-making.
- Distributes educational resources for parents and medical providers on hypospadias careProvides parents with a list of questions to assess urologist qualifications and offers educational materials to improve understanding of hypospadias treatment; also develops resources to improve medical training and treatment protocols.
- Produces personal narrative videos to educate families about hypospadias experiencesRecreates personal stories of individuals with hypospadias using paid actors to protect privacy and support informed decision-making among families.
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Short-Term Rehabilitation Therapy 1 activity
- Advocates for mental health support and long-term follow-up in hypospadias careRecommends routine discussion of psychological impacts and access to mental health services for patients and families, and advocates for long-term follow-up and systematic review of surgical outcomes to improve safety and quality of care.
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Familial Support for Rare Genetic Conditions 1 activity
- Provides peer support and community connection for families affected by hypospadiasOffers a supportive community for parents and individuals affected by hypospadias to reduce isolation and foster connection, including peer-support networks and emotional support resources.
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financials · form 990EZ · fy2024
revenue
Total revenue$0
Contributions & grants$0—
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expenses
Total expenses$20K
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Admin / overhead—
Fundraising—
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balance sheet
Total assets$0
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Net assets$-20K
1 years on record · 2024–2024
relationships · 11
Who they work with
- American Board of Medical Specialities Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- American Board of Urology Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- American Urological Association Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- Canadian Urological Association Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- Federation of State Medical Boards Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- Hypospadias and Epispadias Association Partner — Supports PISSED.ORG's work in providing holistic care and education for hypospadias.
- MyHypeLife.org Partner — Collaborates on collecting and sharing anonymized stories of individuals living with hypospadias.
- Operation Happenis Partner — Collaborates with PISSED.ORG to improve hypospadias care and prevent complications experienced by families.
- Pediatric Urologists of Canada Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- Royal College of Physicians and Surgeons of Canada Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
- Societies for Pediatric Urology Partner — Recipient of petition advocating for improved informed consent practices in hypospadias surgery.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Informed Consent as Patient Empowermentmethodology: informed_consent_educationBy providing education and standardized information about hypospadias treatment options, risks, and outcomes, the organization enables parents to make informed decisions, because transparent and comprehensive informed consent leads to better alignment between patient values and medical decisions.
- Integrated Family, Medical, and Research Advocacymethodology: integrated family and medical supportBy simultaneously raising awareness, supporting families, advancing medical education, and promoting research, the organization improves standards of care for rare pediatric conditions, because systemic change requires coordinated action across clinical, familial, and institutional domains.
- Integrated Mental Health and Medical Supportmethodology: integrated-mental-health-supportBy integrating mental health support into standard care for hypospadias, the organization improves long-term psychological well-being for patients and families, because addressing emotional needs alongside medical treatment leads to more holistic and effective outcomes.
- Peer Support and Community Empowermentmethodology: peer_support_communityBy connecting families affected by hypospadias through peer support and community-building initiatives, the organization improves emotional well-being and empowers individuals to navigate treatment decisions, because shared experience reduces isolation and builds confidence.
- Privacy-Preserving Awareness Campaignsmethodology: privacy-preserving storytellingBy using anonymized, actor-recreated stories to raise awareness about hypospadias, the organization educates the public while protecting individual privacy, because authentic narratives increase empathy and understanding without compromising confidentiality.