VMPL
Thiruvananthapuram (Kerala) [India], October 9: Genetidoc Genetic Clinic and DNA Testing Lab has launched the Genetidoc Rare Disease Forum. It is India's first online forum for rare genetic diseases, where patients and caregivers can ask questions and receive answers from qualified genetics specialists. Membership is free. Families can also connect with one another and follow clinical trials for genetic conditions.
A diagnosis of a rare genetic condition usually raises more questions than a single consultation can answer. Families want to know how the condition is inherited, whether relatives should be tested, what long-term monitoring involves and whether any trials are open. Reliable answers in plain language are hard to find. Because each condition is rare, many families have never met another family facing the same diagnosis.
Specialist answers in one place
Rare genetic diseases are the forum's focus, but its discussions cover genetics more broadly, from hereditary cancer to pregnancy, fertility and genetic testing. It has six sections: genetic rare diseases, genetic testing, genetics in pregnancy and fertility, cancer genetics, frequently asked questions, and a genetic trials registry.
Together the sections hold more than 40 discussion boards. These cover conditions such as Duchenne muscular dystrophy, spinal muscular atrophy, Marfan syndrome, cystic fibrosis and Turner syndrome, and tests such as whole exome sequencing, carrier screening and Non-Invasive Prenatal Testing. Hereditary cancer syndromes and preimplantation genetic testing are among the most active boards.
Genetidoc's genetic counsellors are answering commonly asked questions on each board, so a parent looking up inheritance risk or long-term outlook finds a specialist-reviewed answer before posting. The forum already holds more than 350 discussion threads.
Moderated by genetics specialists
The forum is moderated by Dr Roshan Daniel, Clinical Geneticist and Founder of Genetidoc, and Dr Neetal Nelson, Preventive Genomics Expert at Genetidoc. Genetidoc's genetic counsellors respond to new questions as they are posted.
Forum answers are general information. They do not replace a consultation, and questions about a person's own test report or diagnosis are directed to a specialist appointment. For many rare conditions the research is still developing, so some questions do not yet have a clear answer. Member privacy is maintained throughout.
Free, verified membership
Families apply through a short request form, and every request is verified before access is granted. The forum is focused on India, and families outside India are also welcome.
A community for families
Members can reply to each other's posts and message one another directly. A family managing a condition that affects only a handful of people in the country can now find others who understand the daily realities of hospital visits, school, treatment decisions and planning for future pregnancies.
“Many of the questions we hear are ones families think of only after leaving the clinic,” said Dr Priyanka Patra, Clinical Geneticist on Genetidoc's panel. “Answering them in the open means the next family with the same worry finds the answer already there.”
A public clinical trials registry
The forum is the public part of Genetidoc's genetic trials registry. It currently lists 13 clinical trials for genetic conditions being conducted in India, and a section for international trials is being added. Genetidoc's doctors post new trials as they become available. Members can also share trials and research updates, and the team reviews each one before it appears. A listing does not mean a patient is eligible, because each trial team decides eligibility.
“Families often hear about a trial from a news report or a social media post and have no way to check what it involves,” said Dr Kshitija Patil, Clinical Geneticist on Genetidoc's panel. “Bringing trials into one moderated space, with specialists available to explain them, helps families ask better questions of their own doctors.”
Two families, one rare diagnosis
“Ammu (name changed) had persistent diarrhoea that did not respond to treatment, with only minimal skin changes,” said Dr Roshan Daniel. “Prolidase deficiency usually shows itself through skin ulcers, so this was an unusual presentation. Genetic testing found two disease-causing variants in the PEPD gene and confirmed the diagnosis. Her parents joined the forum to understand the condition. Some weeks later, the family of Kiran (name changed), another child with a similar presentation and a genetically confirmed diagnosis, joined the same discussion. The two families now share what has helped them manage day-to-day care. For the first time, neither family is facing this condition alone.”
Names have been changed to protect patient privacy.
Founder's statement
“Families need somewhere to keep asking questions after a consultation ends, and to hear from others who have walked the same path,” said Dr Roshan Daniel, Clinical Geneticist and Founder of Genetidoc. “The forum offers both, with genetics specialists making sure the information families find is accurate. Free, verified membership keeps that support open to every family while keeping the space safe.”
About Genetidoc Genetic Clinic and DNA Testing Lab
Genetidoc is India's largest network of online genetics specialists, founded by Dr Roshan Daniel. Its panel of 17+ Clinical Geneticists across 12+ states consults in 15+ languages. The platform offers online consultations, genetic counselling and DNA testing across all areas of clinical genetics (prenatal, paediatric, reproductive, oncological, metabolic and adult-onset conditions), with pan-India sample collection. Testing is processed through NABL and CAP accredited partner laboratories, with interpretation and reporting by Genetidoc's own specialists. Genetidoc is ISO 9001:2015 certified.
Join the forum: genetidoc.com/rarediseaseforum/
Consultations: call or WhatsApp +91 80860 67838 | genetidoc.com
Rare Disease Forum by Genetidoc Genetic Clinic - https://share.google/wT9FYrar2ulnBsR9G
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Genetidoc Launches India's First Online Forum for Rare Genetic Diseases
