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115

2783305/2022/GRANT

No. W-1 1037/40/2022-Grants(RD)


GOVERNMENT OF INDIA
MINISTRY OF HEALTH & FAMILY WELFARE

Nirman Bhawan, New Delhi


Dated the l lth August, 2022

To
The Directors/ Nodal Officers,
All the Centres of Excellence
(as per list attached).

the patients suffering


Sub: Guidelines and Procedures for giving financial assistance to
lrom various Rare Diseases.

Madam/Sir,

IncontinuationtothisMinistry'so.M.ofevennumberdatedl9.05.2022(copy
Procedures for giving
enclosed), I am directed to inform that the Guidelines and
Diseases have been
financial assistance to the patients suffering from various Rare
approvedbytheCompetentAuthority.Thesameareenclosedherewithforfurther
necessary action.

Yours laithfullY,

Encl: As above

Under Secretary to,the Govemment of India


0l l-23062068

Copy to:

l.DGHSandChairmanofCTCRD,DirectorateGeneralofHealthServices'
Nirman Bhawan' New Delhi.
116
2783305/2022/GRANT

Guideji4es and Procedules for gjvins financial assistance to thF


patientg suffering from va(ious Rare Diseases

The National Policy for Rare Diseases (NPRD), 2021 was published on 30th March
2021 with aims to lower the incidence and prevalence of rare diseases based on integrated
and comprehensive prevention strategy and providing financial assistance to the patients
suffering from these diseases within the constraints on resources and competing health
care priorities. Details of guidelines and procedures for giving financial assistance, as per

the policy, to the patients suffering from various Rare Diseases are as under:

1. General Conditigns

(i) Financial assistance will be provided to the patients suffering from Rare

Diseases irrespective of their economic condition'

(ii) Financial assistance will be provided to the patients suffering from any of the

rare diseases irrespective of the category of diseases given in NPRD-21. List of


diseases covered for financial assistance as per NPRD, 2O2]- is at Annexure-I. The

rare diseases specified in Annexure-l are diseases identified based on availability of

treatment and reasonably proven clinical outcomes.

(iii) Financial support will be provided to the patient (through coE) suffering from

any of the rare disease listed in Annexure I of this guideline.

(iv) The list of diseases under Group 1, Group 2 and Group 3, as mentioned in
Annexure-|, are not exhaustive and will be reviewed periodically based on updated

scientific data by the Technical Committee of MoHFW.

(v) Patients will be provided financial assistance for their treatment at eight (08)

centres of Excellence (coE). The details of the coEs are given at Annexure-ll.

(vi) More Centres of Excellence shall be added for regional outreach if they are
found to be suitable in terms of infrastructure and human resources based on

RARE DISEASE CELL

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2783305/2022/GRANT

recommendations of the Technical committee of the Ministry of Health & Family

Welfare (MoHFW).

(vii) The employees of central/state Government/Psus/Autonomous

Bodies/Statutory Bodies and their family, who are beneficiary under any Central
Government scheme, such as CGHS/EHS etc., State Government health scheme and
any other scheme of PSUs/Autonomous Bodies/Statutory Bodies, will not be eligible

for getting financial assistance as per NPRD, 2021. lf the Central/State

Government/PSUs/Autonomous Bodies/statutory Bodies employee is not covered


under any of their scheme as mentioned above, an undertaking should be provided
by the Head of the Department of the employee.

(viii) There will be no reimbursement of expenditure already incurred'

(ix) Families covered under Ayushman Bharat - Pradhan Mantri Jan ArogyaYojna

(AB-PMJAY) will also be eligible for financial assistance as per NPRD,2021, if the
disease is not covered under AB-PMJAY packages.

2- Financial Assistance

2.1

(i) Maximum financial assistance admissible under the scheme will be upto Rs.

50 lakh per patient. The financial assistance per patient will be given to the
concerned coE, where the patient is getting treatment/admitted for treatment. The

financial assistance shall not be given to the patient directly.

(ii) Staggeredl requirement of funds may be allowed. However, the limit of


financial assistance will be up to Rs.50 lakh per patient.

lstaarered
Jeoulrement ot tund
tn a case, where the total cost of the treatment estimated by the Rare oisease committee of the coE
ii Rs. 45 lakh However, the
is over few years vit four to five years. ln such cases, the fund will b€
requirement of fund for the treatment of the disease spread
lakh
released for the treatment of the patient based on the requirement till i! reaches Rs 45

tn another situation, suppose the cost of the treatment of the rare disease egtimated by the committee
of the coE is R5 20 lakh After
term outcome not known in resp€ct ofthetreatment provided to the patients
treatment, the patient is recovered. However, asthe lon8 ls
patient will be eliSible for financial assistance upto the
and in case of ie-occurrence of the disease in the sub!€quent year, the Settint
remaining amount i.e. in this case upto Rs 30 lalh (Ri. 50 Lakh_Rs, 20 l-akh).

RARE DISEASE CELL

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2783305/2022/GRANT

(iii) ln cases where the cost of treatment is less than Rs. 50 Lakh, the financial
assistance received under Prime Minister's National Relief Fund (PMNRF) or CM

Relief Fund or from any other source by the patient for treatment, shall be deducted

from the admissible amount of financial assistance under the NPRD-2021'

(iv) ln cases where the cost of the treatment is more than Rs. 50 Lakh, the
financial assistance of Rs. 50 Lakh only will be provided under NPRD-2021'

(v) The coEs shall be given one-time financial support up to a ceiling of Rs.5
crore for procurement of equipment for strengthening patients care services for
screening, diagnosis and prevention (parental diagnosis) for rare diseases based on a
gap analysis. The list of equipment which is likely to be useful for these activities is

given at Annexure-llt.

(vi) As the cost of the consu ma bles/kits is also high, provisions may be made for

providing fund to the CoEs for the procurement of consumables and kits wherever

required.

(v) The coEs may also have option for outsourcing wet labs work as per their
requirement.

2.2 Bv the State Governments


(i) As envisaged in the Policy, the state Governments shall support patients of

such rare diseases (listed in Group 2) that can be managed with special diets or
hormonal supplements or other relatively low cost interventions.

-ffir\t RARE DISEASE CELL


119
2783305/2022/GRANT

2.3 Through Crowdfunding


(i) Keeping in view the resource constraint and compelling health priorities, it

will be difficult for the Government to fully finance the treatment of high cost rare
diseases. The gap will be filled up by providing financial assistance through

crowdfunding. A crowdfunding portal htto://rarediseases. nhp.gov.in has already

been created for receiving such fund.

(ii) The coEs will share information relating to the patients, diseases from which

they are suffering and estimated cost of treatment on the crowdfunding portal.

(iii) The fund received through crowdfunding will be used primarily for the
treatment of the patients suffering from rare diseases. Any leftover fund after
meeting treatment cost can be utilized for research purposes also'

(iv) CoEs have option to explore the possibility of getting financial assistance from

other agencies/drugs manufactu rers/Corporate sector under CSR by signing of MoU.

The content of the MoU may be finalized by the Committee of the COE and
approved by the Director of the COE'

3. Procedure for release of funds

The procedure to be followed is proposed as under:


(i) Application for financial assistance shall be submitted in the prescribed proforma

(Annexure-lv) by the patient or parents of the patient or guardian of the patient to

the coE where he/she approached for the treatment. The proforma should be duly
signed by the treating Doctor of COE (Annexure - V).

(ii) A Rare Disease Committee to be constituted in each COE. The Nodal Officer

for Rare Disease of the CoE will be the Member Secretary of the Committee. COE

may also opt for an outside expert in the Committee, if required'

RARE DISEASE CELL

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120
2783305/2022/GRANT
(iii)
The application received from the Patients/Parents/guardians may be first
scrutinized by the Nodal Officer and thereafter placed before the Committee for

consideration and approval.

(iv) The committee of the coE will take decision for treatment and fund
allocation within 04 weeks of receiving the application.

(v) A separate Head to be created for Rare Disease.

(vi) COEs may demand fund for treatment of Rare Disease patients from MoHFW'

coEs will send their demands based on the recommendation of its Rare Disease

committee and with the approval of the Director of the concerned coE to the Under
Secretary (Rare Disease), Ministry of Health & Family Welfare, Nirman Bhawan, New

Delhi-110011. The following documents should also be submitted along with


demand request:

(a) A copy of application form (Annexure-lV) submitted by the patient or parents

of the patient or guardian of the patient'


(b) A copy of Annexure-V duly signed by the treating Doctor'

(c) A copy of the recommendation given by the Rare Disease Committee of the

concerned CoE.

(vii) On receipt of such request, the Programme Division i.e. Rare Disease Cell in
the Ministry will release the fund as per the procedure followed for release of such
fund with the concurrence of the lntegrated Finance Division (lFD) of the Ministry.

(viii) The CoEs will utilize the fund received by them under NPRD-21 with the
approval of its competent authority and Financial Advisor and by following all the
provisions of GFR.

(ix) After full utilization of the released fund or for the treatment of the new
patients, the CoE may demand additional fund' The same may be released by the

Ministry on receipt of Utilization certificate duly signed by the Nodal officer for Rare
disease of the COE.

-d-\-
RARE DISEASE CELt
121
2783305/2022/GRANT
(x)ln case of any dispute/interpretation of any clause of the Policy or any issue

arising out of implementation of the above p rocedu re/guidelines, the same may be

forwarded to the MoHFW for clarification.

4.

for Rare Diseases at lcMR'


NPRD-21 provides for a hospital based National Registry

TheRegistryisexpectedtoyieldinformationonhospitalbaseddataanddisease
burden. To streamline the process of capturinE data related to
various Rare Diseases,

CoEs have to take action as under:

t. Each CoE to be registered itself on the ICMR Registry immediately'

The Nodal Officer for Rare Disease in each CoE to disseminate


the information
.

about rare diseases such as types of rare disease, their categorization'


financialassistanceprovidedbytheGovernmentoflndiaforthetreatmentof
theserarediseasesetc.toallthedepartments/specialtiesofthecoE.Thiswill
from all
facilitate easy flow of patients to the Nodal Officer for Rare Disease
other concerned DePartments.

. TheNodalofficershouldregisterthedetailsofthepatientonthelcMR
Registry.

lncase,theCoEhasreceivedapatientsufferingfromararedisease,whichis
CICRD for
not mentioned in Annexure I of this guideline, they should intimate
justification and
its inclusion in any of the three categories along with full
scientific data.

,'^{h- RARE DISEASE CELL


122
2783305/2022/GRANT Annexure-l
Group 1: Disorders amenable to one-time curative treatment:

o) Dlsorders amenable to treatment with Hematopoietic Stem Cell Transplantation(HSCl) -


i. Such Lysosomol Storoge Disorders (LSDs) for which Enzyme Replocement Theropy
(ERT) is presentty not ovailoble ond severe form of Mucopolysocchoroidosis (MPS)
tyPe I within first 2 Yeors of oge.
ii, Adrenoleukodystrophy (eorly stoges), belore the onset of hord neurologicolsigns.
iii. lmmune deficiency disorders like Severe Combined tmmunodeficiency(Sc|D)'
Chronic Granulomatous diseose, Wiskot Aldrich Syndrome etc'
iv. OsteoPetrosis
v. Fonconi Anemio

b) Disorders amenable to organ transplantation


i, Liver Tronsplontotion 'Metobolic Liver diseases:
a. Tyrosinemio,
b. Gtycogen storoge disotders (GSD) l, lll ond lV due to poor metobolic
control, multiple liver odenomos, or high risk for Hepotocelluolr
corcinomo or evidence of substontiol cirrhosis or liver dysfunction or
progressive liver failure,
c. MSUD (Mople Syrup lJrine Diseose),
d. Ureo cycle disorders,
e. Orgonic ocidemios.

ii, RenolTronsqlontotion'
o. Fobry diseose
b. Autosomol recessive Polycystic Kidney Diseose (ARPKD),
c. Autosomol dominont Polycystic Kidney Diseose (ADPKD) etc'

iii. potients requiring combined liver and kidney tronsplonts con olso be considered if the
same ceiling of funds is mointoined. (Rorely Methyl Molonicociduria moy require
combined liver & Kidney tronsplant) etc.

Group 2: Dlseases requiring long term / lifelong treatment having relatively lower cost of
treatment and beneflt has been documented in literature and annual or more frequent
surveillance ls required:

a,f Disorders managed with special dietary formulae or Food for special medical purposes
(FsMPl
i) Phenylketonurio(PKU)
ii) Non-PKU hyperphenyloloninemio conditions
lii) Mople Syrup Urine Diseose (MSUD)
iv) Tyrosinemio tYPe 1 ond 2
v) Homocvstinuria
vi) Ureo CYcle EnzYme defects
vll) Glutoric Acidurio tYPe 7 ond 2
viii) Methyl Molonic Acidemio
ix) Propionic Acidemio
RARE DIsEASE CELL

'(\l',J\
123
2783305/2022/GRANT x) lsovoleric Acidemio
xi) Leucine sensitive hypoglycemio
xii) Goloctosemio
xiii) Glucose goloctose molobsorbtion
xiv)Severe Food Protein ollergy

b) Disorders that are amenable to other forms of therapy (hormone/ specific drugs)

i) NTBC t'or TYrosinemio TYPe 7


ii) Osteogenes islmperfecto - Bisphosphonotes theropy
iii)GrowthHormonetheropyforprovenGHdeficiency,ProderWilliSyndrome,
Turner syndrome ond Noonon syndrome'
tv) Cystic Fibrosis- Poncreotic enzyme supplement
v)Primorylmmunedeficiencydisorders-lntrovenousimmunoglobulinondsub
cutoneous thero py (tVtG) replocement eg' X-linkedogommoblobuline mio
etc'
vi)SodiumBenzoote,orginine,citrulline,phenylocetote(t.)reoCycledisorders),
corboglu,Megovitomintheropy(orgonicocidemios,mitochondrioldisorders)
vii) others - Hemin (Ponhemotin) for Acute lntermittent Porphyrio, High dose
Hydroxocobolomininjections(30mg/mlformulotion_notovoilobleinlndioond
hence exPensive if imPorted)
viii)Largeneutrolominoacids,mitochondriolcocktoiltheropy,Sopropterinond
other such molecules of proven clinicol monogementin o subset of disorders

Group 3: Dlseases for which definitive treatment is avallable but chaltenges


are to make
optimal patient selection for benefit, very high cost and lifelong therapy'

3a) Based on the literature sufficient evidence for good long-term


outcomes exists forthe
following disorders

7. Gaucher Diseose (Type I & tll {without significont neurologicol impoirment})


2. Hurler Syndrome IMucopolysocchorisosis (MPS) Type t] (ottenuoted forms)
3. Hunter syndrome (MPS ll) (ottenuoted form)
4. Pompe Diseose (Both infontile & lote onset diognosed eorly before
nt of com Plicoti ons)
dev eloPme
5. Fobry Diseose diagnosed before signilicant end organ domoge'
6. MPS IVA before development of diseose complicotions'
7. MPS Vl before development of diseose complicotions'
8. DNAose for CYstic Fibrosis.

very high and either long term


3b) For the following disorders for which the cost of treatment is
patients
foliow up literature is awaited or has been done on small number of
1. Cystic Fibrosis (Potentiotors)
2. Duchenne Musculor Dystrophy (Antesensce oligoneucletides'
PTC)

3,spinolMusculorAtrophy(Antisenseoligonucleotidesbothintravenous&orol&gene
theroPY)
4. Wolman Diseose
5. Hypophosphotosio
6. Neuronol ceroid lipofuschinosis
RARE DISEAsE CELL

rtte
124
2783305/2022/GRANT Annexure-ll
Details of 08 (Eiehtl Centres of Excellence

S. No. Name of Centres of Name of Nodal Officer/Email id/Contact No.


Excellence
1. All lndia lnstitute of Medical Dr. Neerja Gupta, Associate Professor
Sciences, New Delhi Division of Genetics,
Department of Pediatrics, AllMS, New Delhi,
neerjalT@gmail.com, 9868397529

2. Maulana Azad Medical Dr. Meenakshi Bothra,


College, New Delhi Assistant Professor, Division of Genetics,
Department of Pediatrics, MAMC, New Delhi
Email: m een a ksh iboth ra @gma il.com
8700509704

3. Sanjay Gandhi Post Dr. Shubha Phadke M D Professor & Head,


Graduate lnstitute of Department of Medical Genetics, Sanjay Gandhi
Medical Sciences, Lucknow Post Graduate lnstitute of Medical Sciences,
Lucknow, lndia-226014
Phone: 9839220L99, 97522-2494325
Email: sh u b h a raop had ke @gm a il.com

4. Post Graduate lnstitute of Dr. Ranjit Pal Singh Bhogal, Assistant Professor,
Medical Education and Deputy Medical Superintendent,
Research, Chandigarh Department of Hospital Administration,
Contact No. 7087002089
majorbhogal1984@gmail.com

5. Centre for DNA Dr. Ashwin Dalal,


Fingerprinting & Diagnostics Head, Diagnostics Division
with Nizam's lnstitute of ashwindalal@gmail.com
Medical Sciences, Contact No. 040-27 276747
Hyderabad
6. King Edward Medical Dr. Akash Shukla,
Hospital, Mumbai Mobile No. 9869256376
Email id: drakashsukla @yahoo.com

7. lnstitute of Post-Graduate Prof Suchanda Mukherjee, HOD, Neonatology


Medical Education and 9831485596
Research, Kolkata drsmukherjeeT0@gmail.com

6. Centre for Human Genetics Dr. Sanjeeva GN, Associate Professor, lndira
(CHG) with lndira Gandhi Gandhi lnstitute of Child Health, Bengaluru
Hospital, Bengaluru Mob:9945657034
Email: sanju.gn26@Bmail.com

RARE DISEASE CELL

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125
2783305/2022/GRANT Annexure-lll

services at Centres of Excellence for screening, dlasnosis and prevention (orenatal


dlFgngsisl of rare disease.

. Cytogenetic workstotion with softwore with Fluorescent in situ hyhridizotion


. Multimode reoders for both ELISA ond fluorescent enzyme ossoys
. oNA Sequencer with 8 copillory sequencer
. Mi seq next generotion sequencer
. Next Seq next generotion sequencer
. Liquid chromotogrophy Moss spectroscopy (Tondem Moss spectrometry)
. HPLC (quorternery pump high Performonce Liquid Chromotogrophy)
. GCMS (gos chromotogrophy Moss spectrometry)
, M ic rof I ui d i cs p I otf o r m
o ReolTime PCR (96 well formot) for reol time polymerose choin reoction
. High throughput rNA ond DNA extraction systems
. Quolity Check stotions ond microtips stotion
o Chromosomol Micro orroy plotform
. Newborn screening plotfrom lor fluroimmunoossoy
. Antenotol screening equipment (one stop screening for pre-ecclompsio ond Chromosomol
oneuploidies)
. Bio-informotics set up for doto onolysis using High End desktop
Nest generotion
. Eonis tm systemfor for rore disorders
DNA based newborn screening
. Copillory Electrophoresis system for newborn screening of hemoglobinopothies
. upgrodotion of existing equipment's moy olso be considered to sove costs beneliting o lorger
section
. Any other with permission of the M1HFW with proper justilicotion ond os decided by otechnicol
committee ol experts set up by MoHFw'

RARE DISEASE CELL

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2783305/2022/GRANT
Alrslcrd
Aoolication for Financial Assistance under National Policv for Rare Disease. 2021

1 Name of the Patient (ln Block Letters)

2 Date of Birth

Age

4 (a) Permanent Address along with Pin Code

(b)Address for correspondence

5 (a) Email Address (if available)


(b) Mobile No. (if available)
6 (a) Father's/Mother's name
(c) Husband/wife's name
7 Applicant's Relationship with the Patient

8 Disease from which suffering (Name of the disease)

9 Whether the applicant or the person on whom the patient is


dependent, is an employee of Central/state Government/
PSUs/Autonomous Bodies/Statutory Bodies
10 Amount of Financial Assistance required
11 (tl-Whetn-er treatrnent for the same disease has been taken in
the past.
@opyof the previous
orescriDtion mav also be attached
(a) whether financial assistance has been received from Prime
Minister National Relief Fund (PMNRF) or CM Relief Fund
or any other
sources for treatment of the same
disease.
(b) lf so, full details maY be given.

13 Aadh-t card Na, ,f any (Attach self-attested copy)

I hereby share my Aadhar Number issued by UIDAI &


voluntarily Sive my consent to link my Aadhar Number with my
request for financial assistance under NPRD-2021. I also authorize
Ministry of Health & Family Welfare to use my Aadhar card
details & identity information for authentication with UlDAl.

OECLARATION

1. I declare correct and complete in all respect'


that the information given above is

2. Though tam covered under PMJAY, the amount offinancial assistance required, indicated at
Column 10 above, is only for packages not covered under PMJAY-

Oate: Signature of the Applicant/Patient

RARE DISEASE CELL

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2783305/2022/GRANT

Annexure-V

RECEIVING TREATMENT

Name of the patient & Hospital


Registration No.

Gist of Reports of important


lnvestigations done

Diagnosis-A Short Note


on the present
clinical conditions may
be indicated

The name of the Hospital


where the
patient is receiving treatment

5. Name of the Rare Disease from


which
patient is suffering

6. Amount recommended for treatment

7. Staggered requirement of Fund (year


wise breakup):

8. Item wise break up of expenditure


recommended in Column 6

Name or consumJEtel idiciiEi{uiiEd-Ei

9. Expenditure incurred on the treatment


in the past:

10. tn" the Rare Disease mentioned in cotumn


5 above is not covered under
;:Il1 AB-PMJAY

certified that the patient o


recommended for treatment under ::rjr:o *
?lr"O,, under AB_eMJAY. However, the amount
Column 6 above, i, onty fo,. prat"g"s
not covered under pMJA'-
Certified that the above demand is
within the limit of Rs. 50 Lakh per patient.

Signature of the Treating Doctor with


Official Seat

RARE OISEASE CELt

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2783305/2022/GRANT
266147512022/GRANT

F f! - 26 fi I er-lto Qt - C'-,{-r (RD)

Flte No: W-11037/4012022' Grants IRD)


Covernn-rent of lnoia
Ministry ol llealth & Family Welfare
(Rare Diseases Cell)
Nirman Bhawan, New Delhi
oate& L9/s12022
OFFTCE MEMORANDUM

of
The undersigned is directed to state that the following provision envisaged under Para 10(i)
National Policy for Rare Diseases (NPRD), 2021:

.Finonciol support upto P$. 20 lokh under the umbrello scheme ol Rashtriyo Arogoyo Nidhi
sholl be provided by the centrol Government lor treotment, ol those rure diseoses
thot rcquie
o one-time treotment (diseoses tisted under Group 1). Seneliciories lor such finonciol
populotion'
ossistonce would not be limited to BPL fomilies, but extended to obout 40% ol the
in
who ore eligible os per notms of Prodhon Montti Jon Arogyo Yoiono, for theh treatment
Government teftiary hospitols only.'

may be treated as replaced with the followinS:

.Finonciol support upto Rs. 50 lokhs sholt be provided to the potients suffering lrom ony
cotegory of the Rore Diseoses. The finoncial suppott wilt be provided to the
potients for the

treotment in any ol the centte ol Excetlence (coE) mentioned in NPRD'2021, outside the
Umbrello Scheme oJ Roshtriyo Arogoyo Nidhi."

2. All other provisions ofthe policl will remain unchanged.

3. These amendments come into effect from the date of issue ofthis office Memorandum.

per amended
4. The guidelines/procedure for providing financial asslstance to the patients as
provisions ire being finalized. However, till the finalization of guidelines and in orderto
provide
rare diseases
uninterrupted and enhanced financial assistance i.e. upto Rs. 50 lakhs to the patients of
irrespective of category of disease, funds may continued to be granted from the current budget head
of Umbrella Scheme of Rashtriya Arogya Nidhi (RAN).

5. This issues with the approval ofthe competent authority.

,-;&
(Manish Rai)
Under Secretary to the Govt. of lndia
Tel. 011-23052068
To,

As per list attached

Copy for lnformatlon and necessary *,,j"


-/- l$- l.l:Z
\l V'/
tt.- -..,p a.
.Y*SaB PPSto As (Rarc oisea9trsli -
e rl 22. PPS to AS(Grant rrt,on,, -96r,

01 r.
30
129
2661475120221GRANT
2783305/2022/GRANT
- 2-

', L.'''.i))h
'.-
i 1" , r) 3. Under Secretary (Grants), Ministry of Health & Family Welfare, Nirman Bhawan, New Delhi with
- 2 a request to make necessary provision under the Umbrella Scheme of Rashtriya Arogya Nidhi
i i
(RAN) acco.ding to the revised pro\risions in NPRD, 2021 mentioned in this oM till the
finalization of tuidelines and a separate budget head is created for providing increased financial
assist.nce to the patients of Rare Diseases.
6l) +. fne Nodal Officer, all the 08 CoEs (as per list attached) with a request to process the cases of
rare diseases as per revised provisions in NPRD, 2021 mentioned in this OM. - ljUt oSR.r:, I r"zz-
Finance Division; MoHFW; Co -P
Director (Budget); MoHFw;
The Dir€ctor General and chairman of crcRD, Directorate General of Heahh Services, Nirman
Bhawan, Neu, Delhi :'rd\(''

under secretary to the Govt. of lndia


Tel. 011-23062058

As Der llst attached

1. The s€cretary, Department of BiotechnoloSy, Ministry of Science and Technology, Government ' prosBt>
of lndia; ('] "
'?. The Secretary, Ministry of Corporate Affairs, Government of lndia;
-9.- The Secretary Department of Heahh Research/oirector General, lndian Council for
Medical
Reseerch, New Dclhl; t
lBqo5gr.rd:o:-r-f-o-t)
\ The Secretary, -
Department of Pharmaceuticals, Shastri Bhawan, New Delhl; ----.-
\ The Secretary, Department of Promouon of lndustry and lnternal Tnde, Udyog thawan'
Delhi;
lL'
''6 The Secretary, Oepartment of Revenue, Ministry of Finance, Government of lndia;
\. n" Chairman, National Pharmaceuticat Pricing Authority, Jdlss Floor, YMCA Cultural Centre
Building 1. Jai Singh Road, New Delhi;
The Drugs Controller General of lndia, FDA Shawan, New oelhi;
19' The oirector General, Directorate General of Health services, Nirman Bhawan, New Delhi;
Additional chief secretaries/Principal Secretaries/commissioner (Health) of all
state
Administration (as per list attached), - tl3qoSgzSl>o:-t- (o- 39
dun'
iI6 $$+ -
ll>birector/ln charge, Centres of Excetlence (as per list attachea] (lSq oSSsrblrt,-
(o -7)
I2; NH C,f Y

\\ $l
d\u

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