Introduction

Sachin Sarcoma Society (SSS) is a patient support group and registered cancer society that was started on January 5th, 2018 with an aim to provide guidance, counseling, and support to sarcoma patients across the globe. Its mission is to spread awareness about sarcoma, build companionship with sarcoma-affected families, and remove the fear of sarcoma.

All the team members of the society are either survivors, patients, or caregivers who have been affected by sarcoma in some way. They met at a sarcoma seminar organized by Dr. Sameer Rastogi in 2018, where SSS was formed with his support. It was named after Mr. Sachin Yadav, who himself was a pulmonary artery sarcoma patient and could not survive during the treatment. He had a vision of starting a support group to help patients and caregivers.

SSS is immensely grateful to Dr. Sameer Rastogi, who is a sarcoma specialist at AIIMS, New Delhi. Apart from being the patron of the society, he assists with all information sheets and scientific articles to educate patients and caregivers. All the members of the society have received treatment from Dr. Rastogi and wanted to give back to the community. As a result, they formed SSS, which not only acts as a vital resource for sarcoma patients and caregivers but also provides a safe space for people to share their experiences, learn about sarcoma, and get the support they need.

SSS has a strong online presence, with a website and social media accounts that provide information and support to sarcoma patients and caregivers all over the world.

Here are some specific examples of how SSS has helped sarcoma patients and caregivers:

• One patient who was recently diagnosed with sarcoma was feeling overwhelmed and scared. She reached out to SSS for support and was connected with a mentor who had been through a similar experience. The mentor assisted her in comprehending the nature of her illness, available treatments, and adverse effects. She also encouraged and supported her emotionally.
• Another patient was struggling to afford her sarcoma treatment. SSS helped her to apply for financial assistance programs and provided her with information about other resources that could help her.
• A caregiver of a sarcoma patient was feeling isolated and stressed. SSS connected her with other caregivers who could offer support and understanding. She also attended SSS support groups, which made her feel less lonely.

SSS is making a real difference in the lives of sarcoma patients and caregivers. It is a valuable resource for anyone who has been affected by sarcoma.

Who is Sachin (Our Inspiration)

The idea for Sachin Sarcoma Society (SSS) was envisaged by Dr. Sameer Rastogi, a sarcoma specialist at AIIMS, New Delhi. Dr. Rastogi was inspired by his patient, Sachin Yadav, who was diagnosed with pulmonary artery sarcoma at the age of thirty-five.

Sachin was a doting father to his two kids and a loving husband to his wife. He was also a self-made entrepreneur who had just built a tech start-up company from nothing, over the last two years.

Despite his young age and promising future, Sachin faced the battle with cancer with undying hope and strength. Even when met with setbacks along the way, he never backed down a bit. He was a constant inspiration to everyone who came in contact with him, be it his doctors, his family, or even his fellow patients. He was always ready with a word of encouragement and positivity.

Sadly, Sachin succumbed to his illness two years after his diagnosis. However, his legacy of strength and hope lives on in the form of Sachin Sarcoma Society. SSS is a testament to the indomitable strength of the human spirit in the face of adversity. It is a story of inspiration and hope, and it is a reminder that even in the darkest of times, we can always find light and strength within ourselves.

Click Here to read about Rashi Kapoor’s Story, CoFounder of Sachin Sarcoma Society

Work Done by Sachin Sarcoma Society

Sachin Sarcoma Society (SSS) is a distinguished, registered nonprofit organization headquartered in New Delhi, dedicated to serving individuals afflicted by sarcoma, gastrointestinal stromal tumor (GIST), and desmoid tumors. Over the years, we have provided invaluable assistance to three thousand patients hailing from both India and abroad. Our mission revolves around offering comprehensive support to patients and their caregivers, encompassing emotional, financial, administrative, and logistical aspects. As of January 2023, we have brought together approximately 7000 sarcoma patients, 350 desmoid tumor patients, and 200 GIST patients and caregivers from across the globe.

At SSS, we recognize that our duty goes beyond mere affiliation; it entails fostering a profound sense of companionship and empowerment among our members. To this end, we have established a robust network of patients and caregivers, comprising 40 WhatsApp groups meticulously categorized by both state and disease type. This structure enables patients to build meaningful connections, share experiences, and extend vital support to one another.

Our reach extends far beyond the borders of India, with international patients hailing from the USA, Canada, Australia, Mauritius, Bangladesh, Nepal, Qatar, Portugal, Cameroon, and various other nations, all connected through diverse social media platforms.

Our primary objectives include educating patients about sarcoma and facilitating access to appropriate treatments. Below are some of our significant contributions, which we continuously strive to enhance:

1. Patient Education: We provide patients with guidance and knowledge about sarcomas, including the importance of pathology, the potential side effects of treatments such as chemotherapy, radiation, and targeted therapy, as well as dietary requirements. We also connect patients with sarcoma specialists and fellow survivors to uplift their spirits, instill hope, and foster positivity and courage.
2. Emotional and Psychological Support: SSS offers indispensable emotional and psychological support by providing guidance and counseling to patients facing the emotional challenges of their journey. We extend financial assistance to underprivileged patients who cannot afford the costs of medicines and treatments, directing them towards government schemes like Ayushmann Bharat and Pradhan Mantri Yojana fund, in addition to various crowdfunding platforms. We also collaborate with partners to offer discounted rates for essential medical scans like CT, MRI, and PET.
3. Medical Equipment Provision: We supply vital medical equipment such as wheelchairs, walkers, biopsy guns, and chemotherapy injections to patients in need, particularly those from disadvantaged backgrounds.
4. Blood Transfusions: SSS facilitates blood transfusions for patients undergoing chemotherapy, ensuring that they receive the vital support they require.
5. Medicine Donation: Many patients generously donate their surplus medicines, which we distribute to impoverished individuals in need, alleviating their financial burden.
6. Administrative Assistance: We assist patients in navigating the administrative aspects of their healthcare journey, aiding with hospital registration and facilitating doctor appointments.
7. Patient-Doctor Liaison: Serving as a vital link between patients and medical professionals, SSS helps convey patient perspectives to doctors and vice versa, ensuring effective communication and personalized care.
8. Logistical Support: Recognizing that many patients travel from distant locations, we provide logistical support by helping them find suitable accommodations near hospitals, such as Dharamshalas or hotels, ensuring they have a comfortable stay throughout their treatment.
9. Helpline Services: We operate a 24/7 helpline at 9667248800 to address patients’ queries related to medicines, symptoms, and diagnoses, connecting newly diagnosed patients with sarcoma specialists swiftly and efficiently.
10. Online Presence: SSS maintains an active online presence across various social media platforms, including Facebook, Twitter, LinkedIn, Instagram, and YouTube. Even during the unprecedented challenges posed by the COVID-19 pandemic, we continued our operations online, conducting weekly support group meetings via Zoom to keep our patients connected and informed.
11. Celebrating Life: In addition to our supportive efforts, we organize various events aimed at celebrating life, reinforcing the spirit of hope, resilience, and unity among our members.

As a patient support group, we hold the hands of our members from the moment they receive their diagnosis until they achieve a cure. We strive to ensure that no one feels alone on their journey, instilling in them the knowledge that SSS is a steadfast ally, committed to their well-being and recovery.

We have one dream to educate, empower, and connects patients and the goal is clear to help eradicate the fear of sarcoma, GIST, and desmoid tumor patients and caregivers all over the world.

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