What positive changes have happened for people with HAE, in your country, from 2012 to now?
Our group started in 2015 and at that time we had a WhatsApp group to communicate with one another. In 2018, our RPA reached out to us and we met in Delhi in March 2019 face to face for the first time. The HAE India organisation was formed. Since then, we have created more awareness about the condition and positivity and acceptance in patients about living with HAE. Now after 3 years we have more physicians who can answer our questions and give us proper medication based on the case history. Before 2019 we were all scattered around the country dealing with their own issues, now we are a community who have access to proper medical care of whatever is available in the country with the help of community members
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
Our biggest achievement would be starting HAE India. Dr. Ankur Jindal and his hospital PGIMER in Chandigarh, India became an accredited HAEi ACARE Centre. Apart from that we have convinced patients to get proper medication and created awareness on what HAE is and what can we do to handle it. We had physicians, paediatricians, nephrologists and Geneticists explain and help patients on their questions regarding the medication they are taking.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
We organized 3 events with HAE patients. The first one was the official meet in Delhi 2019. The other two in 2021 and one of which was focussed on mental health with a rare disease in India with the help of a mental health therapist – Arouba Kabir who battles a rare disease herself.
We had an unofficial meet in Chandigarh in 2020 for the Asia pacific society for immunodeficiencies (APSID).
>> An article was published in 2020 in lock down voices website and pages.
>> Another one in our own HAE youngsters page.
We are waiting for the third one to be published.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have a database where we maintain everything related to HAE patients (HAEi Connect) and also we have had 3 workshops with the help of HAEi and we are in the process of setting up a website for HAE India. Unfortunately due to COVID-19, we missed attending the HAE Global Conference in person but thanks to HAEi we were able to attend it online.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
The next step we are looking forward to is to get modern medication in India and to create awareness throughout the country on HAE with the help of organizations such as Organization for Rare Diseases India (ORDI).