SFRD Expert Patient Organization (EPO) - Partnership & Onboarding Form

Section A: Organizational Identity & Contact Information

"Welcome to the SFRD National Alliance. We believe that collaboration is the key to transforming the rare disease landscape in India. This form is the first step in forging a powerful partnership between our organizations. Thank you for joining us."

Full Name of Organization *

As it appears on your legal registration documents.

Date of Inception *

The date your organization was officially founded.

Official Website URL

Annual Event / Observance Day *

The date your organization celebrates as annual event /observance officially.

Social Media Handles *

Please provide links to your primary channels (Facebook, Twitter, Instagram, LinkedIn, etc.), one per line.

Headquarters Address *

Full registered address of your main office.

Official Contact Email *

A general-purpose email for official communication (e.g., info@yourorg.org).

Official Contact Phone *

A general-purpose phone number for your organization.

Unique Expert Identifier

Your permanent identification no in SFRD. Helps you login into SFRD Framework.

Section B: Legal & Structural Information

This information helps us understand your organization's legal structure and ensures compliance for our partnership records.

Type of Organization *

Mission Statement *

Your organization's core purpose.

Vision Statement *

The long-term change your organization aims to create.

Tax Exemption Status

12A 80G FCRA Not Applicable

Upload Key Documents *

Please upload PDF copies of your organization's By-laws, MoA, and AoA. (Max 5MB per file)

Key Office Bearers *

Please provide details for at least three main contact persons (e.g., President, Secretary, Founder).

Section C: Scope of Work & Expertise

Help us understand your specific focus and the incredible work you do. This is crucial for us to map the national ecosystem and direct the right resources.

Primary Disease(s) of Focus *

E.g., "Duchenne Muscular Dystrophy", "Cystic Fibrosis", "Gaucher Disease".

Geographical Presence *

Select all states/UTs where your organization has an active presence or provides support.

Primary Activities *

Patient Support Groups Creating Awareness Education Support Advocacy & Policy Funding Research Financial Aid to Patients Livelihood Support

Prevalence Data of each Rare Disease(s) of Focus in India

Please provide a brief summary by each RD you are focussing upon in India.

No of patients currently on board *

Please provide a brief summary of no. of RD patients against each disease you currently support.

Describe your work in Rare Diseases *

Please provide a brief summary of your key programs like Education / Awareness / Academic Conferences, Patient Services – Value & Volume Impact, Research Initiatives / Clinical Trail Participation / Collaboration with organizations etc. Please include each of the achievements separately.

Section D: Partnership with SFRD - How We Can Collaborate

SFRD aims to be a force multiplier for your efforts. Please select the ways you would like to partner with us to achieve our shared goals.

We are interested in collaborating with SFRD on the following: *

Patient Identification & Referral: Establishing a two-way referral system for newly identified patients. Amplifying Your Voice: Co-hosting awareness campaigns and having SFRD amplify your organization's events and stories on our national platform. Patient Data Management: Utilizing the SFRD framework (secure EMR/Registry) to manage your patient cohort's data, with your organization retaining ownership and control. Policy & Advocacy: Joining the SFRD Policy Advocacy Council to contribute to joint submissions and represent your patient community in national forums. International Collaboration: Gaining access to SFRD's network of international rare disease alliances and research consortia. Clinical Trial Access: Receiving information and facilitating access for your patient cohort to relevant clinical trials within the SFRD network. Resource Co-Creation: Working together to create and distribute multilingual educational materials for patients and doctors.

Section E: Partnership Consent & Agreement (ALL MANDATORY)

This agreement formalizes our partnership, built on mutual trust and a shared commitment to the rare disease community. Please have an authorized representative of your organization complete this section.

I confirm that I am an authorized representative of the organization named in this form. I understand that this partnership is voluntary and collaborative. We can choose to end our association at any time by providing written notice. I consent to SFRD securely storing our organization's information and listing our organization (Name, Logo, Website, Disease Focus) in its public directory of trusted EPO partners. Mutual Patient Referral & Confidentiality: We agree to adhere to a mutually agreed-upon protocol for patient referrals, ensuring that patient consent is always obtained and that all shared patient data is handled with the strictest confidentiality. By checking this box, I confirm that all the information provided is accurate to the best of my knowledge and our organization agrees to the terms of this partnership.

Full Name of Authorized Representative *

Designation *

Date