How can I (an individual) participate in D4R?
Excellent question! Hopefully we have fully addressed individual participation on our main page. If not, in short participating can be as simple as following the hashtag #dazzle4rare on Facebook, Instagram, Twitter, and LinkedIn and sharing posts. Done! Share a many or as few posts as you wish.
If you want to take your participation up to the next level as an organisation, an advocacy group, advocate, or patient, you can submit your 280 character message (including #dazzle4rare) and your logo or photo to us at the email found at the top of the website. We’ll add your message and logo/photo to our Approved Messages page.
If you still have questions, please don’t hesitate to reach out to us using our Contact form. We are happy to help you participate and meet people from various communities and countries around the world!
How can my non-profit/advocacy group participate?
We are excited to welcome any non-profit organisation, advocacy group, advocate, or ally to participate by becoming an event co-host or by submitting their 280 character message and logo/photo to us. While most who join in this capacity are non-profit organisations, we do welcome messages from advocacy groups (like those on Facebook, Inspire, or other platforms) advocates, or allies to the community. We address this in more depth on our main page.
Since our inception in 2016, we have received a few common questions. We hope that the answers below give you a better insight to what we do, how we do it, and why we do it.
Do you have a question we haven’t answered here? Please submit it via our Contact page!
Is Dazzle4Rare a registered non-profit organisation?
Dazzle4Rare (D4R) is not a registered non-profit organisation.
The reason that we have not incorporated in the United Kingdom is because our NPO participants are located in the United States, Canada, UK, Australia, Ghana, the United Kingdom, and elsewhere. Because tax exempt incorporation may vary per country, and we do not have consistent staff in the UK or abroad, we have not sought to register in any country as yet.
While it is possible for UK registered charities to provide grants to charities outside of the UK, these areas are fraught with rules and regulations. Because D4R is organised and run primarily by founder, Kimberly Thomas-Tague, we are unable to meet all the legal and financial requirements. Kimberly alone does not have the financial or personal bandwidth to seek this assistance at this time and prefers to work in patient-centric companies to fund endeavours like Dazzle4Rare.
What is a grassroots organisation?
According to Wikipedia, a grassroots organisation is:
A grassroots movement is one that uses the people in a given district, region, or community as the basis for a political or economic movement*. Grassroots movements and organisations use collective action from the local level to effect change at the local, regional, national, or international level.Wikipedia entry for Grassroots
* in our case it is a social movement
Since our inception in 2016, it has always been our purpose to bring together non-profits, advocacy groups, advocates, and patient allies together for one week of cross-community awareness. We strongly believe that our strength does not soley lie in the strength of numbers in a single community but the strength of many for a common goal – raising greater rare disease awareness and rare disease associated conditions.
D4R has been and continues to build a network of non-profits, advocacy groups, advocates, and allies for social change and awareness around rare disease and associated conditions.
Does D4R fund raise?
In terms of semantics, yes we will accept a monetary gift for the purposes of helping to continue to organise D4R yearly as well as to allow us to continue to help non-profit organisations, advocacy groups, advocates, and allies. This is new to D4R as of 2021.
During Dazzle4Rare 2020 with the help of a UK based jewellery maker (Handmade by Letti), we were able to raise £150 GBP. Those funds were raffled off to a participating non-profit using a random number generator and counting each post made for another community as a qualifying entry. The funds were then privately donated by Handmade by Letti.
We do have merchandise designed exclusively by and for D4R to help fund the operation of this website, fund projects that help non-profit organisations, advocacy groups, and advocates during the off-season, and making a small donation to a participating non-profit in a raffle after the event. Many grassroots organisations fund raise or accept monetary gifts or volunteer support for the purpose of creating social change. Because the D4R philosophy is to help communities further their reach, we all benefit by creating a larger, more visible community.
We do not seek profit. We do seek assistance in many forms in continuing to bring together people from around the world for social growth and change. You can reach out to us to join our team.
Do you have a question we have not addressed here? Please send us a message from the Contact page! We would love to answer your question and add your question here for others.