Chennai (August 2023) :
CIRM is happy to share about our 2nd National meeting held in Tamilnadu, Chennai, on August 27, 2023 .
Center for Ichthyosis Related Members Foundation India- National meet , Tamilnadu @ Chennai, on August 27th, 2023. The meeting was organized at Asha Services in Nungambakkam from 10 AM to 3 PM. The CIRM Foundation was represented by Christina Raj ( Founder & Director) and Nagarajan Anjanadri ( Vice President) . The ichthyosis patients across Tamilnadu had traveled miles to attend the meet along with their families. The patients were mostly children in the age group ranging from 2 months to 18 yrs. 90% of the families are from underprivileged categories. The family members were emotional seeing other patients. They were relieved to see that they were not alone battling this rare genetic disease. The families also knew that there was someone whom they could turn to for help and advice. Many traveled overnight to attend the meet. The families were shocked to see Christina raj, the oldest survivor in Asia and Africa. The families were informed that the life span of severe Ichthyosis patient is not more than 10yrs.
Christina Raj started the meeting by a welcome address. Nagarajan supported by translating in the regional language. We had invited Ms Annupama Chandrakekha , a renowned singer, composer and writer of tamil movies. She spoke about living with Vulgaris ichthyosis.
Christina, Annupamaa and Nagarajan all shared skin care tips and skin management regime to the patients , caregivers and parents . We distributed white petroleum jelly, Glycerin, cotton, bandaids and emollients to the patients. A simple vegetarian lunch with delectable spread was served . After lunch the patients and family members shared their stories and struggles in society. Everyone goes through terrible experiences. All are harassed, shunned, abused, beaten. 95% of the children don’t have access to education. Parents struggle to buy expensive creams and moisturizers that are prescribed, which doesn’t help , but drains them financially. Everyone struggle to get disability certificate. We parted with mixed emotions, with a promise to meet soon . We aren’t alone . We are here to elevate each other. We believe in leave no one behind. We thank the Tamilnadu ichthyosis patients for making this event a success. We also thank worldpatientsalliance, GlobalSkin – International Alliance of Dermatology Patient Organizations United Nations World Health Organization, Timber Pharmaceuticals, Inc.
@worldpatientsalliance
CIRM meets families in Telangana
Warangal (July 2023) : After years of virtual meeting, the ichthyosis group CIRM finally met for the first time in Telangana. This time, it was the Telugu group meet. Dhiren ( President) Sushma ( Secretary) Kunal and Tina the Founder , congregated at Warangal. The meeting was organized at Hotel Hotel Ashoka in the board room Galaxy. We discussed the skincare regime and the importance of skincare. To use the right creams . We also discussed the challenges we face. We drew strength to stand together and surge ahead. We also distributed creams to the families whom we met. Dhiren had come from Europe for this meet. Kunal traveled from Bangalore. Sushma was the main organizer , who planned and arranged the logistics for this event. CIRM, Thanks everyone, for making this event a success.
We will have similar meetings for every state soon.
CIRM participates at GlobalSkin Conference hosted ELEVATE 2023
Brussels (June 2023):
The CIRM India joined the Global Skin International organization as an Associate member. CIRM India was invited by IADPO (International Alliance of Dermatology Patient Organizations, Canada) for the International Conference ELEVATE 2023 . at Brussels, Belgium from May 31st – June 4th 2023. Christina Raj (founder –CIRM India) represented Ichthyosis group from Asia and Africa. The Conference was held at The Crowne Plaza Airport Hotel at Brussels. Patient leaders, renowned dermatologists, scientists and delegates from pharmaceutical companies were at the prestigious event.
The ELEVATE 2023 Conference was designed to strengthen connections, provide opportunities to collaborate and fuel our purpose.:
Elevating our Voices Together — Jose Antonio RUIZ-POSTIGO, from the World Health Organization
(WHO) gave a presentation about the WHO and the opportunities for patient organization involvement.
Advocating for Skin — Patient leaders shared inspiring case studies of how they advocate locally, nationally, regionally and globally.
Navigating Compliance and Patient Engagement with Pharmaceutical Companies — Workshop topic led by the team at The Synergist.
Elevating Our Cause — Came together with fellow patient leaders from every region for a facilitated discussion about regional needs and how to stimulate policy change necessary for access to treatment and care of people living with skin conditions and diseases.
The Village — Shared table space for patient organizations, strategic partners and sponsors to display their printed materials.
CIRM India thanks Thank Marc Yale (President) and Jennifer Austin (CEO ) and entire team of Global Skin for organizing this wonderful event and sponsoring the travel for Christina from India
CIRM participates in the National Dermatologists conclave Jodhpur
Jodhpur : Christina was invited to AIIMS Jodhpur, for National Dermatologists conclave as part of Patient / Dr Interaction. A rendezvous session with Dr CR Srinivas a senior dermatologist helped bridge the gap, the candid conversation with Dr CR Srinivas helped the medical fraternity understand the life of a ichthyosis patient in India. The mounting medical expenses, constant medical intervention and expensive skin emollients take a toll on the patient and family , economically , mentally and financially . Christina was also facilitated by Dr CR Srinivas as the longest Ichthyosis survivor in Asia.
Dr Ayush Gupta, Dr Akshay Jain had arranged for the travel and stay at Fairfield Marriott , Jodhpur .
Navi Mumbai (March 2023): Christina Raj was invited for the OTT webseries of The International Glamour Project pageant, Red carpet premiere on March 23, 2023 at Cinepolis , Seawood Central Mall , Navi Mumbai .
Christina’s life as living with Ichthyosis was captured for the first time. It’s not a glamourous life , but a day living in pain , taking care of skin and braving all odds .
She was a contestant for season 1 for Mrs India 2021. On March 23, she was part of the jury panel for season 2 . It was an honor sitting on the other side of the table and judging the Queens.