CureSMAIndia is pleased to announce 2nd Phase of Spinraza Individual Patient Humanitarian Access Program (SIPHAP) by US based NGO Direct Relief,* from 7th January 2021.
Program Duration: 7th Jan 2021 to 8th March 2021.
Program Details: Given below is the list of newly added Hospitals n centers in this 2nd phase in 2021. Also given is the inclusion n exclusion criteria, steps to be followed and contact details.
LIST OF NEW SIPHAP CENTERS IN INDIA :
1. PGI Chandigarh
2. Sir Gangaram Hospital, Delhi
3. Moulana Azad college n Hospital, Delhi
4. Peerless Hospital, Kolkata
5. Calcutta Medical College n Hospital, Kolkata
6. Nizam Hospital, Hyderabad
7. Rainbow Children Hospital,Hyderabad
8. Wadia Hospital, Mumbai
9. Nair Hospital, Mumbai
10. Indira Gandhi Hospital, Bangalore
11. CMC Vellore
12. Amruta Institute, Cochin
13. Deenanath Mangeshkar Hospital, Pune
EXISTING SIPHAP CENTERS IN INDIA SINCE JULY 2019:
1. AIIMS Delhi
2. SGPGI Lucknow
3. BAPTIST Hospital, Bangalore.
INCLUSION – EXCLUSION CRITERIA: Inclusion criteria:
SMA type 2 and 3 only.
1. Genetic Test Reports showing SMN 1 deletion.
2 Children who are sitters and less than or equal to 5 years age.
3. Any age BUT can can walk independently at least 10 steps with or without orthotic support.
4. Informed consent to be signed by patient /parents.
Exclusion criteria :
1. Those who are already on Zolgensma OR Risdipalm should not apply.
2. Those with severe scoliosis are excluded
3. Those on ventilator support are excluded.
4. Haematology n Liver function parameters are adequate, Doctors have all the details.
4. Those who have other neuro brain, siezure, spinal cord issues are excluded – details are with Doctors.
Steps to be followed by parents /patients /CureSMAIndia members:
1. Kindly check the Inclusion n exclusion criteria and assess whether your child is eligible or not.
2. If your child fits into inclusion criteria, then please call Neurologist /Geneticist from any of above 13 +3=16 nearest hospital nearest to your location n fix up an appointment.
3. Visit the hospital on the day of appointment taking ALL Covid19 Precautions and get your child’s evaluation completed.
4. Follow instructions from the Doctor strictly.
5. Please note that Doctors will only apply BUT selection will be done by MEC (Medical Exper Committee) in USA and thier decision will be final.
6. Please cooperate with Doctors and DO NOT RUSH.
7. Please DO NOT blame the Doctor if your child is NOT selected. Doctors can only apply for your child but they have no role in selection.
Contact details: Northern India: Archana Panda- 9377012135
Eastern India : Moumita Ghosh – 9432888613
Western n Central India : Alpana Sharma – 9727946303
Southern India: Dr. Razeena – 9446341617
CureSMAIndia is extremely happy to be part of Rare Disease Consultation “Together for Rare” in Eastern India along with PPHF, on 12th Dec 2020.
‘SMA Awareness Month, August 2020’
Cure SMA Foundation of India & Philips Present
Webinar on Respiratory Care in SMA
1st August 2020, Saturday, 7pm to 9pm.
‘CureSMAIndia partners with Roche India and SRCC Hospital, Mumbai on 8th Aug 2020’
Genentech Receives FDA Approval of Evrysdi (risdiplam) for the Treatment of SMA.
Genentech, a member of the Roche Group, today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for Evrysdi (risdiplam) to treat adults and children 2 months and older with spinal muscular atrophy (SMA).
CureSMAIndia announces #SMArterTogether
initiative. Within this initiative we plan to hold activities on engagement n involvement of #SMAWarriors
and Caregivers throughout 2021. The first activity under this initiative we are starting with is “mental n emotional health wellbeing”.It’s true that all of us are busier than normal people owing to the extra time we spend on our/our child’s health. During this daily struggle, we often forget to breathe and take time to focus on our mental health.
However, it’s high time we talk about it and lend each other a helping hand to grow stronger, not just physically but mentally too.
Keeping this in mind, Cure SMA has designed this quick survey to understand your mental health needs.
We request you to kindly fill the form in the attached link and help us to plan some events accordingly.
Thanks in Advance.
CureSMAIndia family welcomes you to the first session of Bedhadak Bol on the theme – BEING ACCEPTED WITH SMA in our new initiative #SMArter_Together, an online discussion series.
So join us for our very first virtual meetup of Bedhadak Bol which deals with mental health issues and many more to follow.