November 2024:
The Indo US Bridging RARE Summit 2024, held from November 16-18 at the Indian National Science Academy in New Delhi, India, successfully concluded its mission to advance global partnerships in rare disease advocacy, research, and innovation. The summit, organized by the Indo US Organization for Rare Diseases (IndoUSrare) in collaboration with the All India Institute of Medical Sciences (AIIMS), New Delhi, brought together over 400 delegates both in-person and online.
Key Highlights
- The summit focused on the theme “Combating Rare Diseases by Fostering Cross-Border Collaborations, Data Sharing, and Clinical Trials”
- Dr. Harsha Karur Rajasimha, Founder and Executive Chairman of IndoUSrare, led the organizing committee along with Dr. Madhulika Kabra from AIIMS New Delhi
- The event featured prominent speakers from India and the US, workshops, and a gala dinner with an award ceremony
Notable Attendees and Speakers
- Hon’ble Minister of State for Rural Development and Communications, Dr. Chandra Sekhar Pemmasani, delivered the keynote address, praising the summit and India’s National Policy for Rare Diseases 2021.
- Dr. V K Paul, Member of NITI AAYOG, served as the Guest of Honor.
- Christina Raj, Founder and Director of Center for Ichthyosis, spoke about the life of rare disease patients in India.
Key Themes and Discussions
- Cross-border patient engagement
- Indo-US contrast in care pathways for screening, diagnosis, and treatment options
- Data privacy and governance across borders
- Digitization of rare diseases – registries and emerging markets
- Diversity, equity, inclusion, and access (DEIA) for orphan drugs
- Orphan drug clinical trials and regulatory pathway
The summit emphasized the importance of turning isolation into inclusion for rare disease patients through cross-border collaboration. Participants formed working groups to identify actionable opportunities for advancing U.S.-India strategic collaborations in research, advocacy, clinical development, and market access throughout the year.
Plans for the 2025 Indo-US Bridging RARE Summit are already underway, building on the success of this year’s event.
August 2024: Christina Raj, founder of the Center for Ichthyosis Related Members Foundation India (CIRM India), has made significant progress in her mission to support individuals with Ichthyosis in India. In July 2024, after a six-year search, she successfully located two patients with Lamellar Autosomal Recessive Congenital Ichthyosis (ARCI) type, thanks to the assistance of SDM Ms. Disha Badwani
Omprakash’s Story
Christina contacted village sarpanch Shabana Saboo, who helped connect her with Omprakash’s family. Omprakash’s situation is dire:
- He has been isolated and bedridden due to paralysis.
- A quack’s treatment involving oil and burnt ash, applied under the misconception of a snake curse, caused severe reactions.
- His spine and legs have stiffened, leaving him dependent on family care.
- Facial muscles are affected, making it difficult for others to read his emotions.
- He resorts to begging for cooking oil mixed with water to moisturize his skin.
- Villagers refer to him by the nickname “tirki,” meaning snake in the local dialect.
Deri’s Struggle
Christina traveled an additional 20 km to meet Deri, a 27-year-old woman in Shapur village:
- Deri is the oldest of three children and lives with her father and married younger sister.
- She avoids social interaction due to fear of people’s reactions to her appearance.
- Her father reports she hasn’t smiled since childhood.
Tina with Omprakash
Tina with Deri
Challenges Faced
Both Omprakash and Deri face significant challenges:
- Lack of official documentation (birth certificates and Aadhar cards).
- Discrimination at local hospitals, where they are charged four times the normal rate due to misconceptions about their condition.
- Social stigma and isolation due to their appearance and misunderstandings about Ichthyosis.
Christina provided them with a four-month supply of creams and emollients to help manage their condition. The CIRM Foundation acknowledged the support of Savaari travels and driver Jitender Singh in this outreach effort.
This story highlights the critical work being done by Christina Raj and CIRM India to support and advocate for individuals with Ichthyosis, addressing both medical needs and social stigma associated with the condition
May 10th 2024 – Distress Call from Lesotho Africa
A lady from Lesotho, Africa, Mother of a 6 yr child reached out to us for help. the child has Lamellar ichthyosis. she wrote “so my son have been sick with flue for a week now, so yes he wasn’t eating so he’s become weak…now his skin is changing to be more tight and swollen all over” Tina connected with Dr Rashmi Sarkar for help. Dr Rashmi was in London at ILDS meet. She responded to my SOS. She connected with the mother. Life is difficult for patients with rare disease. if child is young, the parents struggle is more. Thank you Dr Rashmi, you help and support gives us strength and hope. Center For Ichthyosis Related Members is a support system for patients in Africa as well.
May 1 st 2024 Ichthyosis Awareness Month May 2024- Center for Ichthyosis Related Members Foundation. CIRM continues to create awareness across countries in south east asia.
A father of an 8 yr old boy reached out to us on WhatsApp. Center for Ichthyosis Related Members Foundation has a global group and patients across Asia and Africa are part of our community. Azhar is from Sargoda, Pakistan. His 2 sons are affected. They are from marginalized section, and live in obscure part far away from city. He struggles financially. He finds it difficult to buy white petroleum jelly and vegetable glycerin for his children. The local dermatologist prescribed moisturizers that are way beyond his reach.
Ichthyosis condition is rare, its expensive, we need Drs beyond borders , where patients who cannot afford can connect to them . Center for Ichthyosis Related Members does not have any border. We are one community and we stand by everyone who struggles with with similar skin condition. Latest Update by Azhar is his son is doing well and he is happy to be connected with CIRM India.
April 2024 : Online meet
April 14 th Update – Webinar with Dr Rashmi Sarkar and team : As an initiative of spreading
awareness about skin cancer , a webinar was organized . It was a wonderful initiative to participate in an interactive session virtually on Ichthyosis – Special skin care & protection from Ultraviolet rays organised by Centre for Ichthyoses Related Members(CRIM), India in association with PDS- Pigmentary Disorders Society, IWDA- Indian Women’s Dermatologic
Association, as a World Skin Health Initiative of International League of Dermatological Societies (ILDS)- International Society of Dermatology (ISD) on 14th April 2024 .Thank you Dr Rashmi Sarkar participating dermatologists were, Dr Sonali Langar, Dr Samipa Mukherjee, Dr Ayushman Bindal and pediatrician, Dr Srikanta Basu. We had the session in English and Hindi . It was initially for an hour , but as the patients started asking more question , we had to prolong the webinar for another hour. We thank the Drs for taking time out address Ichthyosis Community.
New Delhi February 2024
Center for Ichthyosis Related Members community had its first meeting in . As part of Rare Diseases month, the team met in Delhi on February 17, 2024. Group had discussed points on the proposal that should be sent to the Govt to appeal to include Ichthyosis in rare diseases category in India. The meeting was presided by Christina Raj (Founder & Director ) . The other patient attendees were Tina Batla, Amandeep Singh, Sabir Ali, wife Roshni with daughter Shama (5 yrs), and Miriam (4 months). Sivasankaran and wife with son Siby (16 yrs) and Aradhana (5 yrs), Dhiren Patra , Kunal Gupta and Sushma Peri joined on the video call. The event had Dr from AIIMS who joined us on video call. The proposal was submitted to the undersecretary for Ministry of Health. This is a major milestone in the history of Ichthyosis patients in India. We now await for the Govt to revert with a positive response. This is the first step in spreading awareness for Ichthyosis in India.
Hyderabad October 2023:
10 yr boy with severe Ichthyosis and Sjogrens syndrome. Christina (Tina) contacted UNICORPUS Healthcare to seek help for Vicky, who has mobility challenges & comprehension issues. CIRM India and family of Vicky consulted the Word and Deed hospital, met Dr RajKumar , an orthopedic. He checked Vicky and advised physiotherapy to work on his mobility and brain coordination to help him walk without support. Dr Nikhil and KumaraVel, the chief physiotherapist, conducted free sessions for 2 weeks. Thank you, @unicorpus_health_foundation
Visakhapatnam September 19 & 20, 2023
CIRM India – Andhra Pradesh patients meet Christina Raj, founder & Director, who traveled to Visakhapatnam to meet ichthyosis patients who live in Andhra Pradesh. She was picked up by a kind benefactor Mr Ram, a businessman in Vishakhapatnam, He offered to take her to the little boy , 7 years old Jaiwardhan , who lives in a village with his family . She had to travel to a village that’s 200kms away from the city. The village is in a far-flung remote corner, without easy access for transportation. The family is from a very low income group, who struggle for food. The medication for the 7 years ichthyosis boy is impossible. The 7yr boy’s limbs are curled up like tendrils, too soft and the bones are fragile. The boy is paralyzed from his waist below. He can’t sit for more than a few minutes, he slides and slumps on his side.. The boy is dependent on the family to even drink a glass of water, as someone has to make him drink. The boy winces at the slightest touch. He sits in a dark, cool place as the weather is sultry, humid, and hot in his place.
Tina experienced warm hospitality as she explains: “The parents insisted that I have something, I didn’t want to break their heart, I asked for half a cup of black tea/ coffee, whichever they have. I was shocked to see that they were asking neighbors for sugar, tea leaves and milk to prepare tea for me. The neighbors were helpful, the tea was ready in 5 minutes, they brought me a cup of black tea, it had the love of humanity and solidarity. The neighbors also insisted that I have lunch. I promised to come again and have lunch with them. The neighbors are poor, but they were happy to see that someone had come to see that little boy , someone who has skin like that little boy and who can understand the pain and challenges of ichthyosis. The boy was scared to be close to me, fearing I would be rough and grab and twist his limbs as everyone did earlier to check. The parents tell everyone who came for a photoshoot was rough. Is this humanity causing physical pain to anyone? The parents told me that 3 years ago, some guy impersonated a Govt official with a promise to get help, took RS 5000 INR from them, and disappeared. The family is quite poor, I saw that they survive on the daily wage income, which is very hard for the family to sustain and take care of the boy and buy creams and moisturizers for him. The parents shared the ordeal they went through when the boy was admitted in a Hospital. He was in ICU for a month, then one morning, a lady in white saree came and chased them away from the hospital, she said they had overstayed and were just shooed out. They were not given any discharge papers or diagnosis papers. Is this how a rare disease patient is treated in our country? Everyone has the right to live in dignity. Rare disease patients need to be treated with care, given personal space. I travel a lot to meet severe Ichthyosis patients across India because we don’t have representation in India.
On Sept 20th at 7 am, I was having breakfast in the hotel, I received a call from another family who travelled overnight and came to Vishakhapatnam with their 4 year old son Mohd Basha. He has Ichthyosis Vulgaris, They aren’t aware of skin care and management. They were using coconut oil all over his body, which made the little boy greasy and oily all over. I could see desperation and hope in the parent’s eyes, they were happy to be part of an ichthyosis community that understands and accepts everyone. Christina spent a few hours with the family, bought white petroleum jelly, Glycerin, Glycerin bath gel, cotton and antiseptic creams. The trip to Vishakhapatnam was very emotional and successful. CIRM strongly believes in the adage “Leave no one behind “ .”
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.