Umeed DMD Foundation ("we", "us", "our") is deeply committed to protecting the privacy of the families and individuals who reach out to us. This policy explains what information we collect, how we use it, and the choices you have.
Because we work with families navigating a sensitive medical condition, we treat every piece of information you share with us with the highest level of care and discretion.
We collect information only when you voluntarily provide it to us — for example, when you fill in the Patient Registry, send us a message, or contact us via WhatsApp or email. This may include:
Your name, phone number, email address, and location · Your child's age, year of diagnosis, ambulatory status, steroid use, and genetic information · Your query, concerns, or the support you are seeking · How you heard about us.
We do not use cookies, tracking scripts, or analytics on this website beyond basic server-level access logs.
We use the information you provide solely to:
Respond to your message and provide you with personal support · Connect you with appropriate specialists, physiotherapists, or community groups · Understand the landscape of DMD in India and improve our services · Compile anonymised, aggregated data about the DMD community in India (for example, number of families in each state) — without identifying any individual.
We will never use your information for marketing, unsolicited outreach, or any purpose unrelated to supporting DMD families.
We will never share your personal information or your child's medical information with any third party — including researchers, pharmaceutical companies, hospitals, or other NGOs — without your explicit written consent.
If we ever wish to share your information for research purposes or to help connect you to a clinical trial, we will contact you first, explain exactly what we intend to share and with whom, and proceed only if you agree in writing.
We do not sell, rent, or trade any personal information under any circumstances.
Information submitted through our Patient Registry is stored securely and accessed only by the founders of Umeed DMD Foundation. We use password-protected, encrypted storage wherever possible.
Messages received via WhatsApp or email are retained only for as long as necessary to support you and maintain a record of our interaction.
We do not store sensitive genetic data (such as mutation reports) on our systems. If you share such documents with us, they are used only to guide our response to you and are not retained in our records without your knowledge and consent.
You have the right to:
Request a copy of any personal information we hold about you · Ask us to correct any information that is inaccurate · Ask us to delete your information from our records at any time · Withdraw from the Patient Registry at any time, without any explanation required.
To exercise any of these rights, please write to us at hello@umeeddmd.org. We will respond within 7 working days.
Our Patient Registry collects medical information about children with DMD, submitted by their parents or legal guardians. We treat this information with the utmost sensitivity. No information about a child will ever be shared, published, or used in any way without the explicit written consent of the parent or guardian who submitted it.
We do not knowingly collect information directly from minors.
We may update this Privacy Policy from time to time. If we make material changes, we will note the date of the update at the top of this page. We encourage you to review this policy periodically.
If you have any questions about this Privacy Policy or how we handle your information, please write to us at hello@umeeddmd.org. We take every query seriously and will respond personally.