Request for services for persons living with Undiagnosed Congenital Disorders, Genetic and Rare Disorders

Request for services for persons living with Undiagnosed Congenital Disorders, Genetic and Rare Disorders
REQUEST FORM
The goal of this application is to enable Rare Disease Ghana Initiative process claims for relief services and support for persons living with undiagnosed and rare diseases.

By filling and submitting this form, I grant Rare Disease Ghana Initiative the permission to use my information to process request for relief services on my behalf or my family under the Patient wellbeing and Care Coordination Program.

All information you provide in this application is secured and protected in compliance with the Data Protection Act, 2012 (Act 843) and the data protection policy set out by Rare Disease Ghana Initiative (read full policy here https://www.rarediseaseghana.org/privacy-policy/).

For any additional relevant information please contact us via orphan@rarediseaseghana.org / info@rarediseaseghana.org ; or visit our office at MVWF+22 Adentan Municipality, Lakeside Estates, Ashale-Botwe, Greater Accra, Ghana.

Applicant Information
Name of Applicant *

First Name Last Name
Phone Number *
Email *
example@example.com
Address *

House / Street Address

Region

City/Town District

House no/ GhanaPost GPS Code
Gender/Sex *

Male Female
What is your relationship with rare diseases? *

Patient Information
Is the information requested same as the information previously provided above? *

Yes No
Name of Patient/ Person affected *

First Name Last Name
Primary Contact Number *
Email
example@example.com
Address *

House / Street Address

Region

City/Town District

House no/ GhanaPost GPS Code
Date of Birth *

Month Day Year
Date
Age *
Gender/Sex *

Male Female
Health Insurance Number

Clinician Information
Physician Name

First Name Last Name
Email
example@example.com
Phone Number

Area Code Phone Number
Specialty
Health Facility
Medical Practice Professional License number *

Medical History
Summary of patient medical history
Do you or your relative/patient have a confirmed diagnosis of a congenital, genetic or rare disease *

Yes No
If yes, which congenital, genetic or rare disease have you / your relative been diagnosed with?
You should be able to provide some evidence to confirm your diagnosis (this can be a medical records or pictures)
If No, list all symptoms that patient currently experience.
Upload relevant documents supporting your diagnosis or suspicion of a rare, genetic disease. *

Browse Files
This can be a medical report, a laboratory or radiological investigation or both or pictures of the patient. Cancel of
How many family members are affected by this genetic or rare disorder? *

COMMUNITY AND PEER SUPPORT
Have you ever joined a support group for before?

Yes No
Do you currently join a support group?

Yes No
Name of support group you previously joined.
Location
What do you hope to benefit from join a support group.
state your reasons for joining a support group.

GENETIC TESTING AND OTHER LABORATORY INVESTIGATIONS
Previous Genetic Testing done
Previous Genetic Testing done

Type of support services used by patient
Current physical and medical condition of patient
Are you available to discuss next steps over the phone
I give consent for RDGI to store and share information in this form and other communications with a genetic testing laboratory and other professionals working with RDGI for the purposes of understanding cases, designing studies, and other uses related to this patient.

DRUG AND MEDICATION REQUEST FORM
REQUEST FOR ORPHAN DRUGS AND PRODUCTS

Rare Disease Ghana Initiative (RDGI) considers requests for coverage of drug products not listed by the Foods and Drugs Authority (FDA) but have been approved in other jurisdiction and essential for the treatment of chronic, rare and genetic disorders. This form is intended to facilitate requests for drugs under the RDGI’s Therapeutics Program. RDGI may request additional documentation to support the request. Please ensure that all appropriate information for each section is provided to avoid delays.
Type of request
Drug Requested
Requested drug product
DIN
Strength / Dosage form
Frequency of administration
Expected start date
Duration of therapy
DIAGNOSIS AND REASON FOR USE
Diagnosis for which the drug is requested
Reason for use over formulary alternatives
If the patient is currently taking the requested product, please provide start date & objective evidence of its efficacy
Date

Month Day Year
Date
Supporting documents(test results and/or radiological report

Browse Files

Cancel of
Details of improvements in clinical symptoms
Current and / or Previous Medications
Please provide details of alternatives (listed drugs and/or non-drug therapy) tried for this condition *
Provide patient’s concomitant drug therapies for other conditions
Clinical Information
Please provide relevant medical data (e.g. culture and sensitivity reports, serum drug levels, laboratory results):
The collection and use of information on this form is in accordance with the Data Protection Act, 2012 (Act 843) as set out in the RDGI Patient Data Privacy and Confidentiality Agreement. If you have any questions about the collection or use of this information, kindly contact Rare Disease Ghana Initiative at info@rarediseaseghana.org/ orphan@rarediseaseghana.org or call +233 55 271 6011 or contact the Director of Therapeutics Programs, Rare Disease Ghana Initiative, F393/4, Otswe Street, Osu, Accra- Ghana
Authorized prescriber (Full name)
Signature

Clear
Registration number
Date (yyyy/mm/dd)

Month Day Year
Date
Any other information we should know?:
Should be Empty:

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Request for services for persons living with Undiagnosed Congenital Disorders, Genetic and Rare Disorders

REQUEST FORM

Applicant Information

Patient Information

Clinician Information

Medical History

COMMUNITY AND PEER SUPPORT

GENETIC TESTING AND OTHER LABORATORY INVESTIGATIONS

DRUG AND MEDICATION REQUEST FORM