Our community
Your story belongs here.
HemoLife Social is a place for people with bleeding disorders, families, caregivers and professionals to connect and learn. You do not need to have everything figured out to share your experience.
Sharing your own health journey is welcome. It does not authorize unrelated advertising, research or reuse, and it does not make this community a clinical service.
An adult community, worldwide
HemoLife Social membership is for adults age 18 and older, in any country. Community access does not establish clinical-service availability in your location. Parents and adult caregivers are welcome; protect children's identifying information.
Share your story honestly
Your wins, frustrations, questions, creativity and different experiences are welcome. Speak from what happened to you. Do not invent experiences or promise the same results for someone else.
Support people without prescribing
Discuss treatment experiences and questions for a care team. Do not diagnose another member, tell them to change medication or dosage, or delay needed care. General education and personal medical care are different.
Protect privacy
Share only what you are comfortable making available to your audience. Do not post another person’s medical records, private messages, contact information or identifiable health story without appropriate permission. Take particular care when discussing children and avoid identifying documents. Members-only does not mean confidential clinical care.
Be open about business relationships
If you work for, own, represent or receive compensation from an organization relevant to your post, make the relationship clear in the content. You can be proud of your work and transparent about it. You do not need to disclose a diagnosis to participate professionally.
Give honest feedback respectfully
Positive and negative experiences are welcome under the same standards. Describe what you experienced without threats, harassment, doxxing or fabricated accusations. Organizations do not control independent reviews. Do not post incentivized ratings.
Ask before commercial contact
Do not scrape member information, send unsolicited sales messages or pressure people to change providers or products. Availability and insurance networks can affect personal options.
Keep medication exchanges off the platform
Do not sell, trade, give away or solicit prescription medication here. Use legitimate assistance channels and your care team for access questions.
Respect ownership
Share music, photos, videos and writing you created or have permission or another lawful right to use. Giving credit alone does not provide permission. Obtain consent before recording or sharing someone else’s participation.
Make room for different lives
No hate, exploitation, bullying, threats or discrimination. Respectful discussion of menstruation, reproductive health, disability, mental health and relationships is welcome. Sensitive medical images may need a content warning. Nonconsensual intimate imagery is prohibited.
Help protect the community
For privacy requests, security concerns or moderation, contact owner L.A. Aguayo at hemolifepod@gmail.com, or use Ideas & help. Do not include medical records, private messages or copies of harmful images in a general report. These channels are not continuously monitored and are not emergency or clinical services. Dedicated safety reporting and appeals are still being established.
In practice
- “This was my experience; I’m discussing it with my clinician.”
- Welcome. “Stop your medication and use my dose” is not.
- “I work for this organization and am sharing its educational event.”
- Welcome. A disguised sales pitch pretending to be an unaffiliated patient is not.
- “A treatment did not work well for me.”
- Honest criticism is welcome. Fabricated reviews and threats are not.
Take the message with you
Your story belongs here. Share honestly, respect privacy and support each other without personal treatment instructions. Be clear about paid or professional relationships. Honest reviews are welcome, including criticism. No harassment, hidden sales pitches, medication trading or content you do not have the right to share. Members-only is not confidential clinical care. For medical decisions, work with your care team. HemoLife Social is not an emergency service.
HemoLife Social is not an emergency service. For a medical emergency, call 911 or seek emergency care. Do not wait for a community reply.