Frequently Asked Questions
Answers to common questions from our community. Find your category below to get started.
The best way to start is by filling out our Patient Onboarding Form. This helps us gather all your information in a structured way. If you need help, you can call our national helpline, and a trained coordinator will guide you through the process.
No. All of SFRD's core services, including registration, patient navigation, and connection to our network, are completely free of charge.
SFRD is not a hospital or a medical provider. We do not provide diagnosis or treatment. Our role is to be your navigator—we connect you to the right, verified experts (doctors, labs, hospitals) within our network who can provide these services.
Your data privacy is our highest priority. All your information is stored in a secure, encrypted database. We will never share your identifiable information with anyone—not even a doctor in our network—without your explicit, written consent. You are the owner of your data.
While SFRD is not a funding body that can cover all costs, we help in two key ways: 1) We partner with labs and hospitals to provide special discounted rates for patients in our network. 2) We will guide you on how to apply for relevant government schemes and other financial aid programs.
The 'diagnostic odyssey' for rare diseases can be long and complex. While we cannot guarantee a specific timeframe, our entire model is designed to accelerate this process by connecting you to the right experts and labs faster than you might be able to on your own.
A 'Rare Disease Champion' is a trained SFRD volunteer who will be your personal point of contact. They are there to provide emotional support, help you understand the process, coordinate appointments, and be a friendly, reliable guide on your journey.
Once your onboarding is complete, you will receive login credentials for our secure patient portal. Through this dashboard, you can track the status of your case, view communications, and access educational resources specific to your needs.
A diagnosis is the beginning of a new chapter. We will then connect you with your 'homogeneous group' (other families with the same condition), the specific Expert Patient Organization for your disease, and a team of doctors and hospitals who can provide care and management. You remain a part of the SFRD family for long-term support.
Absolutely. You are in full control of your data. You can contact us at any time to change your consent preferences for research, clinical trials, or any other data use you previously approved.
By joining, you become part of a national mission to solve the most challenging clinical cases. You gain access to a curated network of peers, contribute to national-level data, and get opportunities for research and mentorship, all while our team handles the administrative burden.
The primary engagement model is pro-bono, based on the availability you specify. However, for structured, long-term engagements like leading an expert panel or specific contracted consultations, SFRD may offer an honorarium.
We operate with the highest ethical standards. Patient cases shared for virtual review are anonymized. Your direct contact details are never shared with patients without your explicit, case-by-case permission. All interactions are governed by our strict Code of Conduct.
Your time commitment is entirely flexible and based on what you specify in your onboarding form (e.g., 1-2 hours/week, flexible). We respect your busy schedule and will only match you with cases and activities that align with your availability.
Our internal clinical team first vets all patient inquiries. Cases are then matched to you based on your specific area of expertise (e.g., Lysosomal Storage Disorders, Skeletal Dysplasia). You will receive a complete, well-documented digital case file through our secure portal.
Absolutely. If you have a patient facing a diagnostic or treatment challenge, you can refer them into our network to access our full range of support services, including connections to other specialists, labs, and support groups.
By participating in case reviews, you contribute to a valuable national dataset. SFRD plans to facilitate multi-center research studies and publications based on anonymized, aggregated data, with all contributing clinicians receiving due academic credit.
We have a strict verification process. Upon onboarding, we verify your Medical Council registration number and credentials to ensure the integrity and high quality of our expert network.
As a subject matter expert, your insights are invaluable. We may invite you to review policy documents for medical accuracy or contribute your expert opinion to our submissions to government health bodies.
You will have access to a secure professional portal where you can easily update your contact information, areas of expertise, and weekly availability at any time.
The primary benefit is strategic. SFRD will help you build a recognized vertical for rare disease care by providing specialized training for your staff and a streamlined funnel of qualified patient referrals, positioning your institution as a leader in this underserved field.
You will receive pre-screened, well-documented patient cases through our secure digital platform. This eliminates unqualified inquiries and provides your clinicians with a comprehensive patient history upfront, improving efficiency.
It means establishing an internal protocol to ensure SFRD-referred patients are given appointments or admissions with reduced waiting times compared to the general queue, acknowledging the urgency of their condition.
SFRD will organize and provide free access to CMEs, workshops, and training modules for your clinicians, nurses, and paramedics on identifying and managing rare diseases, delivered by national and international experts.
During onboarding, we agree on a special discounted rate for SFRD patients. This rate is applied to all referred patients. Our platform's payment module is designed to handle this, including any co-payments from SFRD for needy patients.
Our platform is web-based and requires no complex technical integration. Your designated nodal officer will be given secure login credentials to manage referrals and update patient statuses, requiring only an internet connection and a web browser.
We will prominently feature your hospital in our public directory of trusted 'National Care Alliance' partners. We also highlight our joint successes in our annual reports, on social media, and at national healthcare forums.
You are expected to handle all patient data received from SFRD with the same high level of confidentiality and security as you would for any other patient, in full compliance with all NABH/JCI and national data privacy regulations.
Yes, we highly encourage it. Your clinicians can and should also onboard individually onto our Healthcare Professional Network to participate in virtual case reviews and other collaborative activities.
Once onboarded, your nodal officer will be our point of contact to plan joint initiatives. We can co-host diagnostic camps in your community or discuss your institution's participation as a site for upcoming clinical trials.
SFRD acts as a force multiplier. We amplify your voice on our national platform, connect you to a broader network of doctors and researchers, provide a free technology framework to manage your patient data, and represent your community's needs in our collective policy advocacy efforts.
Absolutely not. We respect your autonomy and your primary relationship with your community. Our role is to support and complement your work, not replace it. Patients with your specific disease will always be directed to you as the primary expert organization.
We offer you free access to our secure, modern patient registry platform. This can help you manage your patient cohort data in a structured, interoperable way. Importantly, you remain the owner and custodian of your data; we are simply providing the tool.
We will feature your organization's work, events, and patient stories on our national social media channels and website. When we speak to policymakers, we will do so as an alliance, bringing your specific insights to the table.
No, the partnership is entirely free. It is a collaborative alliance built on a shared mission.
SFRD is building relationships with global rare disease alliances. When we learn of international research opportunities or clinical trials relevant to your disease area, we will immediately share this information with you to pass on to your patient community.
It is a coalition of our partner EPOs and medical experts. When SFRD drafts a policy recommendation, we will circulate it within the council for your input, ensuring our advocacy is truly representative of the entire community's needs.
It's a two-way street. When we identify a patient with your disease, we refer them to you. Similarly, if you have a patient who needs access to a specialist or lab in our broader network, you can refer them into the SFRD system for navigation support.
That's fantastic. We can explore ways to ensure our systems are interoperable, so that anonymized data can be shared for larger research studies (with all necessary consents), without you having to migrate your existing system.
Once you are onboarded, our Communications & Advocacy Manager will reach out to your designated contact person to discuss your annual calendar and and identify opportunities for joint campaigns, such as on your specific disease awareness day.
We need a diverse range of skills! From on-ground community outreach and patient support (as a 'Rare Disease Champion') to professionals offering their skills (legal, IT, design) and students helping with events and social media. Everyone has a role to play.
It's flexible. On our onboarding form, you can choose from options like 1-3 hours a week, 4-6 hours, or being available on a flexible, event-based basis. We value any time you can contribute.
Yes. All volunteers go through a mandatory orientation about rare diseases and our code of conduct, especially on patient confidentiality. For specific roles like a 'Rare Disease Champion', you will receive specialized training on patient interaction and navigation.
Not at all. While medical professionals are welcome, most of our volunteer roles, especially in support and awareness, do not require a medical background. The most important qualifications are empathy, reliability, and a passion for the cause.
You will get access to a volunteer portal where you can log your hours and see the tasks you've completed. This helps us track your impact and is useful for providing you with experience certificates.
While volunteer roles are unpaid, we are committed to looking at our pool of dedicated, high-performing volunteers first for any relevant paid positions that may open up in the future. Your experience with us is a huge asset.