Indian Organisation for Rare Diseases

Indian Organisation for Rare Diseases The Indian Organization for Rare Diseases (IORD) was incorporated as a not-for-profit organization in USA & India in 2005.

Indian Organisation For Rare Diseases (IORD) is an umbrella rare disease organisation, incorporated as a non-profit organisation in India as well as in the USA. We are an umbrella organization and represent interests of all rare diseases, individual patients, patient support groups, health policy advocates & health care provides for rare diseases in India. With a slogan of 'Each One, Identify Ten'

, IORD strives for their rights with either advocacy or treatment facilitation & help them lead a dignified life with one or more of the following advantages:

Patient-Centric Information
Platform for Voicing
Disease-Specific Patient Registry
Rare Disease Advocacy
Symposiums on Rare Disease
Treatment Facilitation
Disease Awareness & Prevention
RD Patient Rights

Join Us!

Dr. Srinivas Namineni, Director, IORD & renowned Pediatric Dentist at Rainbow Children's Hospital, Hyderabad, shares pra...
11/07/2026

Dr. Srinivas Namineni, Director, IORD & renowned Pediatric Dentist at Rainbow Children's Hospital, Hyderabad, shares practical insights on using nitrous oxide-oxygen inhalation sedation to reduce anxiety in children.



https://www.instagram.com/reel/DTK-91WjLVD/

Prof. Ramaiah Muthyala, President & CEO of IORD, described Andhra Pradesh's initiative to develop a State Policy for Rar...
07/07/2026

Prof. Ramaiah Muthyala, President & CEO of IORD, described Andhra Pradesh's initiative to develop a State Policy for Rare Diseases as a historic milestone, calling it the first such public policy consultation by any Indian state.

https://www.rarediseases.in/andhra-pradesh-state-policy-rare-diseases-stakeholder-conference/


Govt of AP Health Department

Andhra Pradesh launches stakeholder discussions on a state policy for rare diseases, bringing together government, experts and patient groups.

We sincerely appreciate the Government of Andhra Pradesh (GoAP) for successfully convening the recent Stakeholder Confer...
28/06/2026

We sincerely appreciate the Government of Andhra Pradesh (GoAP) for successfully convening the recent Stakeholder Conference on Rare Disease Care, in which IORD had the privilege of participating and contributing to its success. The conference demonstrated the State's commitment to strengthening the rare disease ecosystem through collaborative engagement.



Govt of AP Health Department

12/05/2026

May is Cystic Fibrosis (CF) Awareness Month!

Cystic Fibrosis (CF) is a progressive genetic disease that affects the lungs, causing persistent lung infections and limiting the ability to breath over time. According to American Lung Association, it is second most common inherited disorder occurring in children in United States. About 70,000 people worldwide live with CF and about 1000 new cases are diagnosed each year.

Diagnosing CF is a multistep process and a complete diagnostic clinical evaluation include a newborn screening, a sweat chloride test, a genetic or carrier test.

To have CF, a child must inherit one copy of CFTR gene mutation from each parent. People who have only one copy of CFTR gene mutation do not have CF and they are called as carriers. If both parents are carriers of CFTR gene muation, they have 25% chance of having a child with CF. When one parent is carrier and another parent has CF, they have 50% chance of having a child with CF.

While commonly associated with chronic lung disease and pancreatic involvement, CFTR-related disorders can also significantly impact reproductive health.

Carrier genetic testing not only play a key role in CF diagnosis but testing also allows parents to find out what are their chances of having a child with CF to help inform important decisions on family planning.

Greater awareness, early diagnosis, multidisciplinary care, and access to genetic counselling can help individuals and families make empowered reproductive and healthcare choices.

Cystic Fibrosis Foundation
Cystic Fibrosis Trust IHW Council World Health Organization (WHO) Cystic Fibrosis Research Institute Indian Organisation for Rare Diseases EURORDIS-Rare Diseases Europe Organization For Rare Diseases India Rare Disease Foundation Cure4 Cystic Fibrosis Foundation Cystic Fibrosis

Pallapothala Venkatesh and Anusha’s 2-month-old baby boy has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a...
12/05/2026

Pallapothala Venkatesh and Anusha’s 2-month-old baby boy has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and life-threatening genetic disease that is slowly taking away his strength. The treatment costs ₹9.5 crore, an unimaginable amount for the family.

Your donation, no matter how small, can help give this little boy a chance at life.



Donation Link:

My name is Pallapothala Venkatesh, and I am raising funds for my newborn Baby boy , who has been diagnosed with Spinal Muscular Atrophy (SMA), a rare and life-threatening genetic disorder.

Join the Global Albinism Alliance community meeting in Delhi on May 4, 2026. Open to persons with albinism and families....
28/04/2026

Join the Global Albinism Alliance community meeting in Delhi on May 4, 2026. Open to persons with albinism and families. Register now to attend.

https://www.rarediseases.in/albinism-community-meeting-delhi-may-2026/

Register: https://forms.gle/117hdPf4ZQrKTEPL7

On Monday, May 4, 2026, the Global Albinism Alliance (GAA) will host an albinism community gathering in Delhi, India, for people with albinism and their relatives, on the occasion of the visit to India of Antoine Gliksohn, GAA’s Executive Director. The exact location will be communicated to regist...

May this Ugadi bring fresh hopes, prosperity, and happiness to your year ahead.
19/03/2026

May this Ugadi bring fresh hopes,
prosperity, and happiness to your year ahead.

Holi is the time to forgive, forget, and spread the warmth of love. Wishing you a blessed and joyful festival!
04/03/2026

Holi is the time to forgive, forget, and spread the warmth of love. Wishing you a blessed and joyful festival!

Address

Reg. Office (India): Plot 397, Road 22b, Jubilee Hills, Hyderabad (Telangana), Telangana
Hyderabad
500033

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