Rare Disease Organization - IndoUSrare's Global Collaboration

OUR IMPACT

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52

Patients Alliance Member Foundations

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500+

Rare diseases represented

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20,000+

Patients connected

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50+

Countries covered

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Hosted 25 global events, Invited 30 speakers at 14 conferences

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Policy inputs to US FDA and Indian Govt on data sharing and diversity.

Corporate Partnerships
6

Corporate Partnerships

Global Partnerships
17

Global Partnerships

donation

Raised $100,000+ through donations and grants

HELP OUR CAUSE

$
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Donation Total: $20

All donations are tax deductable

Frequently Asked Questions (FAQs) - Indo-US Organization for Rare Diseases

Indo-US Organization for Rare Diseases (IndoUSRare) is a non-profit organization dedicated to advancing research, advocacy, and collaboration in the field of rare diseases through Indo-US partnerships. Our mission is to address the challenges faced by individuals and families affected by rare diseases by fostering international collaborations between stakeholders in India and the United States.

Rare diseases, also known as orphan diseases, are medical conditions that affect a small percentage of the population. These diseases are often chronic, debilitating, and life-threatening, and they pose significant challenges for diagnosis, treatment, and access to healthcare.

The goals of IndoUSRare include:

  • Facilitating collaborations and partnerships between Indian and American researchers, clinicians, patient advocates, policymakers, and industry stakeholders.
  • Promoting rare disease research, innovation, and drug development through interdisciplinary approaches and international collaborations.
  • Advocating for policy change, funding, and resources to support rare disease research, healthcare, and patient support programs.
  • Raising awareness about rare diseases and advocating for the needs and rights of individuals and families affected by rare diseases.

There are several ways to get involved with IndoUSRare, including:

  • Becoming a member: Join our network of researchers, clinicians, patient advocates, policymakers, and industry stakeholders.
  • Volunteering: Contribute your time, skills, and expertise to support our initiatives, events, and advocacy efforts.
  • Donating: Make a financial contribution to support our programs, research projects, and patient support initiatives.
  • Collaborating: Explore partnership opportunities with IndoUSRare to advance rare disease research, advocacy, and healthcare initiatives.

While IndoUSRare does not provide direct patient services, we collaborate with patient advocacy groups, healthcare organizations, and other stakeholders to support individuals and families affected by rare diseases. We advocate for improved access to healthcare, resources, and support services for rare disease patients and families.

IndoUSRare supports rare disease research through:

  • Facilitating research collaborations and partnerships between Indian and American researchers and institutions.
  • Providing funding, resources, and support for interdisciplinary research projects focused on rare diseases.
  • Organizing scientific conferences, workshops, and symposiums to promote knowledge sharing and collaboration in rare disease research.

Yes, IndoUSRare offers educational resources, webinars, and training programs on various aspects of rare diseases, including diagnosis, treatment, research, and advocacy. Our goal is to enhance knowledge and awareness about rare diseases among researchers, clinicians, patients, and the general public.

Stay informed about IndoUSRare’s activities, events, and initiatives by:

  • Subscribing to our newsletter or mailing list.
  • Following us on social media platforms such as Twitter, Facebook, and LinkedIn.
  • Visiting our website regularly for updates, news, and announcements.

IndoUSRare is an independent non-profit organization and is not affiliated with any government agencies. However, we collaborate with government agencies, research institutions, patient advocacy groups, and other stakeholders to advance our mission and goals.

For more information about Indo-US Organization for Rare Diseases, you can contact us via email at info@indousrare.org or through our website’s contact form. We welcome inquiries, collaboration proposals, and feedback from individuals and organizations interested in rare diseases and Indo-US partnerships.

Global Webinar on “Forgotten & Unseen: A Global Perspective on Life as an X-Linked Carrier”

Join us along with “Remember The Girls”  and  “Child Youth Care Zimbabwe”  for a global webinar on “Forgotten & Unseen: A Global Perspective on Life as an X-Linked Carrier”! Indousrare is excited to have an incredible panel of speakers who will share their experiences and insights on this important topic.
All age groups are welcome to Participate.
Date: Apr 25th, 2023
Time: 10:00 AM EST / 4:00 PM CAT / 7:30 PM IST
Registration: https://bit.ly/xlinkedcarrierglobalwebinar

The banner image of the Global Perspective On Life as a X-Linked Carrier Panelists.
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