Events and Campaigns: Highlights from Rare Disease Foundations

There is a glaring unmet need in the field of rare diseases. The absence of knowledge, research, funding, and support for these conditions invariably leads to misdiagnosis, care disparities, and isolation for countless patients and their families.

IndoUSrare is a non-profit organization dedicated to advancing research, advocacy, and collaboration in rare diseases through Patient Alliance and Corporate Alliance Programs. We aim to foster international collaborations between stakeholders in India and the United States, a vital step in our collaborative efforts to make a difference.

What is the importance of these events and campaigns?

Rare diseases, with their debilitating symptoms and limited treatment options, affect millions of people globally. Often overlooked due to their low prevalence, these conditions present significant challenges for patients and their families.

However, through their tireless work in awareness campaigns, patient support, advocacy, and research, numerous rare disease foundations are making a global impact, connecting individuals and communities worldwide in addressing these issues.

The work of these rare disease foundations/organizations is crucial in raising awareness about rare diseases and their impact. These campaigns help reduce stigma, inspire hope, and encourage empathy by shedding light on patients’ challenges.

Additionally, many foundations/organizations organize fundraising events to support research and develop new treatments, furthering the cause and bringing us closer to a future with better treatments and understanding.

Here’s a pie chart illustrating the various events and campaigns highlighted by rare disease foundations. The chart represents the relative importance and impact of each initiative:

This visual representation emphasizes each campaign’s significant contributions and efforts in raising awareness, supporting research, and advocating for those affected by rare diseases.

This blog highlights key events and campaigns organized by various rare disease foundations, showcasing their efforts to make a difference.

Rare Disease Day: A Global Spotlight

Every year, on the last day of February, the global community unites to observe Rare Disease Day. This worldwide event is dedicated to raising awareness about the difficulties faced by individuals with rare diseases and advocating for enhanced access to diagnosis, treatment, and care.

Rare Disease Day initiatives have reached millions, from colorful campaigns to educational webinars. In 2024, the theme “Share Your Colours” encouraged individuals to communicate their remarkable stories and experiences, fostering community and solidarity.

Rare Disease Day has become a powerful platform for change by amplifying the voices of patients and their families.

Indo US Organization for Rare Diseases (IndoUSrare) has always been a steadfast ally to rare disease patients, and Rare Disease Day 2024 will be no exception.

Beyond honoring these individuals on February 29 through online and in-person events, we will address the enduring challenges faced by the rare disease community: the high costs of treatment, gaps in research and development, diagnosis complexities, limited patient pools for clinical trials, equity, and access issues.

Our contends that a framework encompassing cross-border international collaboration, data sharing and patient registries, and decentralized clinical trials is imperative for overcoming these obstacles.

Advocacy in Action: Foundations Making a Difference

As a non-profit organization located in the Biohealth Capital Region and a platinum member of the National Organization for Rare Disorders (NORD), We hosted the Indo US Bridging RARE Summit 2024 in Delhi India to combat rare diseases by fostering cross-border relations, data sharing, and clinical trials.

The primary collaborating partners from US and Indian community for the Summit included Centre for Cellular and Molecular Biology, Biohealth Innovation, Inc., George Mason University, Virginia Biotechnology Association, BioHealth Capital Region Forum, All India Institute of Medical Sciences (AIIMS) New Delhi, Centre for DNA Fingerprinting and Diagnostics (CDFD) India, Sir Gangaram Hospital, Prince Williams Economics Development and Health Tourism, Tamahar Trust, Aarogya Seva, Global Genes, and other sponsors like Fondation IPSEN & IKP Eden.

This landmark event, co-organized with the esteemed All India Institute of Medical Sciences, New Delhi, promised an inspiring convergence of thought leaders and innovators from India and the United States.

With an agenda including groundbreaking keynote sessions, hands-on workshops, and vibrant discussions, the summit delivered insightful ideas aiming to transform the landscape of rare disease research and treatment.

Weren’t you a part of this summit? Register to get the visuals from the summit covering new partnerships, explore groundbreaking achievements, and experience the cultural side at our Gala Dinner and Award Ceremony.

Events by IndoUSrare to Empower the Rare Disease Community

To collaborate with the global rare disease community and connect with patients to cover unmet needs, IndoUSrare has organized several events including Rare Disease Day, Art4RARE & other insightful webinars on the occasion of rare disease awareness months like Trisomy Awareness Month, Ayurgenomics, Chemistry, Manufacturing, & Controls in drug development etc.

Explore more about our upcoming events from here: https://summit.indousrare.org/

Awareness Campaigns: Leveraging Social Media

The Power of Social Media

Social media has become a powerful tool for raising awareness about rare diseases. Campaigns can reach a global audience quickly and efficiently, making sharing information and gathering support easier.

Case Studies

Successful social media campaigns like #ShareYourRare and #RareDiseaseDay have gone viral, significantly increasing public awareness and engagement.

These campaigns often feature personal stories, videos, and infographics, making them relatable and impactful. Lessons learned from these campaigns emphasize the importance of storytelling, visual content, and community involvement.

Conclusion

At IndoUSrare, our journey has been marked by significant achievements in supporting individuals with rare diseases. Nonetheless, we are reminded daily that our mission is far from complete.

Our dedication to making a meaningful impact drives us to actively support various rare disease foundations. We know that through our collective efforts in these partnerships, we can amplify the voices that need to be heard.

Also Read: Educational Webinars: How They Educate and Empower the Rare Disease Community