Sarcoma Society (SSS) is a patient support group, a registered cancer society started on 5th January 2018 which aims to provide guidance, counseling, and support to sarcoma patients all over the globe. The mission of the Society is to spread awareness about sarcoma and build companionship with sarcoma-affected families. The vision is to remove the fear of sarcoma. All the team members of the society are either survivors, patients, or caregivers who are affected by sarcoma in some way or the other. All like-minded members who had a vision of helping other patients met in a sarcoma seminar organized by Dr Sameer Rastogi in 2018 and this patient support group were 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 and had a vision of starting a support group to help patients and caregivers.
The support group is immensely grateful to Dr. Sameer Rastogi who is a sarcoma specialist at AIIMS, New Delhi for all his support and guidance being their patron, and helping the support group with all information sheets, scientific articles made to educate patients and caregivers. All the members of the society have received treatment from Dr Rastogi and wanted to give it back to the community so formed this group
Who is Sachin (Our Inspiration)
The idea for Sachin Sarcoma Society was envisaged by Dr. Sameer Rastogi, inspired by his patient Sachin Yadav.
Sachin, at the age of thirty-five, was a doting father to his two kids and a loving husband to his wife. He was a self-made entrepreneur with had just built a tech start-up company from nothing, over the last two years. He came in contact with Dr. Sameer about two years from today, with a diagnosis of pulmonary artery sarcoma – a very rare type of cancer with a low survival rate. Over the next two years, Sachin fought the battle with cancer with undying hope and strength. Even when met with setbacks along the way of treatment, he never backed down a bit. He was a constant inspiration to everyone who came in contact, be it his doctors, his family, or even his fellow patients. He was always ready with a word of encouragement and positivity. He was such a beam of hope that it was unanimously decided to name the society after his, to honor his undying spirit of a fighter that lives on. Throughout his life and even in his death he has shown all of us, the indomitable strength of the human spirit in the face of the adversary that is cancer.
Work Done by Sachin Sarcoma Society
SSS is a registered, one-of-a-kind sarcoma society based in New Delhi. Over the years, it has helped three thousand patients from India and abroad. It has three main support groups to support sarcoma, GIST, and desmoid tumor patients and caregivers. There are around 2700 sarcoma patients, 150 desmoid tumor patients, and 100 GIST patients and caregivers who have joined the support group from all parts of the globe (updated on January, 2022). We have a strong network of patients and help them emotionally, financially, administratively, logistically. We have a wide network of patients and caregivers and there are around 40 WhatsApp groups that are categorized state wise and disease wise so that patients can build companionship with each other and support each other. Besides patients from India, there are international patients from the USA. Canada, Australia, Mauritius Bangladesh, Nepal, Qatar, Portugal, Cameroon, etc all connected through various social media platforms.
Our aim is to educate patients about sarcoma and help them get the correct treatment. Following are some of our work/contributions and we strive to do better each day
- Provide guidance and educate patients regarding the importance of pathology in sarcomas, side effects faced due to chemotherapy, radiation, dietary needs, side effects of the targeted therapy medicines, and the treatment and connect patients with sarcoma specialists and other survivors to boost their morale and instill hope, positivity, and courage.
- Provide necessary emotional and psychological support to patients by guiding and counseling them. provides financial support to those patients who are underprivileged and unable to afford the cost of medicines and treatment by donating medicines and informing them about various government schemes like Ayushmann Bharat, Pradhan Mantri yojana fund, and various crowdfunding platforms to raise funds and helps them get CT scans, MRI, PET scans, etc at a discounted rate with the help of collaborators. Many poor and needy patients have been helped financially by doing crowdfunding for them.
- Provide medical equipments such as wheelchairs, walkers, biopsy guns, chemotherapy injections to poor and needy patients.
- Help patients in getting blood transfusions done and helps in arranging blood for needy patients undergoing chemotherapy.
- Many patients donate their medicines once they progress and their costly medicines are then provided to poor and needy patients free of cost.
- Support many patients administratively by guiding them about procedures to get registration done in the hospital and helping them to meet the doctor.
- The support group acts as a bridge between the patients and the doctors, by explaining the patient’s- doctors’ perspectives to each other.
- Many patients come from different parts of the country and other parts of the globe. The support group helps them logistically by helping them search for Dharamshalas or hotels near the hospital and providing arrangements for their stay till the end of the treatment.
- We have started a helpline number 9667248800 which assists patients 24*7 with queries related to medicines, symptoms, and diagnosis and connects newly diagnosed patients with sarcoma specialists. The support group has an online presence on all social media platforms of Facebook, Twitter, LinkedIn, Instagram, and YouTube. Even during an unprecedented time of pandemic like COVID, we continued working online and having weekly support group meetings through zoom to help keep patients connected.
- We also organized various events to celebrate life.
Being a patient support group holds the hand of every patient right from the time they get diagnosed to the time they get cured and makes them feel that they are not alone and support group is there with them.
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.Tweet