- Event to be held virtually this year across the country united by a live broadcast from Bangalore
- This year Racefor7 hopes to break the stigma and silence about rare diseases
24th February 2021, Bangalore: In the backdrop of Rare Disease Day 2021, Organization for Rare Diseases India (ORDI) a not for profit organization representing the collective voice of all rare disease patients in India, is conducting the sixth edition of Racefor7. It is a unique run/walk/bicycle ride with 7000 people running or walking 7 kilometres to raise awareness about rare diseases. This year the event is being held virtually across the country united by a live broadcast from Bangalore at 6.30 am IST. Racefor7 symbolises the 7000 rare diseases, the average of 7 years it takes to diagnose a rare disease and the estimated 70 million rare disease patients in India.
This year, the event aims at virtually uniting people from across the country to address the needs of the rare disease community and enable them to lead lives of dignity. With a proud message of Rare is many, rare is strong and rare is proud, the event will seek to promote access, inclusivity, and de-stigmatization around rare diseases. The pandemic has been particularly hard on rare disease patients who have faced increased challenges of access to ongoing treatment and emotional stress and trauma caused by lack of access and the pandemic itself.
Over the last five years, Racefor7 has witnessed participation from stakeholders across the rare disease community, including patients, and the general public.. This year interested participants can join in virtually from any venue they are comfortable with to show their support for the cause. In addition, cycling has also been added as an option this year.
In India, the primary challenges that is faced today when it comes to rare diseases is a lack of awareness amongst the general public about the disease. Moreover, there is stigma around the disease that makes it impossible for rare disease patients to lead lives of self-worth and dignity. Elaborating further, Prasanna Shirol, Founder Director, ORDI, said “Addressing the needs of the Rare Disease community requires immediate attention and intervention from the Government of India. There is an urgent need of a Rare Disease Policy to support Rare Disease patients holistically. We have seen the positive impact of Racefor7 through these years in raising awareness about rare diseases but more needs to be done. We need to increase our efforts to show “Rare is Many. Rare is Strong. Rare is Proud”. I request all members of the public to support and participate in Racefor7 2021 which is being held virtually, enabling people across the country to participate. For more details, visit www.racefor7.com.”
“IQVIA is delighted to, once again, extend its support to the cause of the rare disease community in India through Racefor7, an event we have been associated with since its inception. Over the last five years, we have seen the positive impact of this event in creating greater awareness for rare diseases but a lot more is needed. Although this year’s event is virtual, our commitment to helping raise the voices of the rare disease community so that their voices are heard and result in better access and acceptance remains as steadfast as ever,” said Amit Mookim, Managing Director, IQVIA South Asia, main sponsor of Racefor7. Rare Diseases is a key therapeutic focus for IQVIA who has provided clinical services for more than 321 rare disease studies in 87 countries worldwide since 2014.
Another major challenge arising from lack of awareness about rare diseases is delayed diagnosis and lack of treatment options. Early intervention is important to ensure patients can get the care and support they need to lead a better quality of life.
Addressing the treatment aspect of rare diseases Dr. Meenakshi Bhat, Clinical Geneticist, Centre for Human Genetics (CHG) said The majority of rare diseases are inherited genetic disorders which begin in childhood and often require life-long management. In a few of the rare diseases where a treatment is available, it needs to be taken lifelong and is often very expensive. It is important for all stakeholders including patients, their families, doctors, scientists, pharmaceutical industries and the government to work together towards raising awareness and a better understanding of these medical disorders, and develop new and innovative therapies that will become available to all patients in an equitable manner.”
Ms. Shambhavi Ravishankar, a patient with Alagille Syndrome, lawyer and patient advocate with ORDI said, “I have lived with Alagille Syndrome since birth. We are in constant need of medical support and expertise, spanning from physical to mental. An early diagnosis can slightly arrest health deterioration and ease the burden amongst patients like us. Life, as a medically complex person, has been isolating/lonely at the best of times, while it has been threatening and hopeless at the worst of times. This is the case for many Rare Warriors like me. Racefor7 has changed some of that for us and shown us the path towards HOPE. It has given us a platform to advocate for ourselves, push for policy change and raise awareness WHILE finding hope and purpose in our own lives.”
Racefor7has been a platform to bring together the rare disease community to raise their collective voice towards creating awareness for rare diseases. The event has seen 30,000+ participants over the past five years and has led to positive outcomes for the community.
Besides Racefor7, ORDI launched the first Rare Disease Helpline in India (+91 8892 555 000), Rare Disease Care Co-Ordination Centers (RDCCC), the first Center of Excellence for Rare Diseases (COERD) in India at Bengaluru, the first exclusive Day Care Center for Rare Diseases in India at Bengaluru, the campaign for a National Rare Disease Policy, the first NMD (Neuromuscular Clinic) in India for rare disease patients and India’s first assisted living facility for Rare Disease patients in Bengaluru, to name a few.
About Organization of Rare Diseases India (ORDI):
Founded in Feb 2014, ORDI is a patient cantered non-profit organization with the mission to improve health of patients with rare diseases across India through awareness, advocacy, collaborations, and information dissemination. ORDI represents the collective voice of all patients with rare diseases in India to effect government policy making. ORDI has identified and taken on the grand challenges facing the rare diseases community in India and is committed to systematically and holistically addressing those challenges.
|Mr. Swamy||Mr. Prasanna Shirol|
|Head -Operations||Co-founder and Executive Director, ORDI|
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