Awareness & Advocacy 2017-09-12T15:50:56+00:00

Awareness & Advocacy

Because it is a very rare disease, Riboflavin Transporter Deficiency is not well recognized, understood or researched, which is one of the greatest challenges facing individuals and families affected by the disorder. The general public is usually unfamiliar with it and does not know how to help.  Individuals with RTD are often initially misdiagnosed and potentially go undiagnosed for years.  Cure RTD works to increase awareness in the medical community as well as to improve public aware of this disease.

There are many ways to increase awareness within your immediate network and beyond:

  • Social Networks
  • Media
  • Email or Letter Writing Campaigns
  • Community Awareness
  • Fundraising Events

Social Networks

Spread the word about Cure RTD through your online social networks and friends. “Likes” and “Followers” dramatically improve our ability to reach people with RTD and raise awareness in the general public. You can help us spread the word by clicking on the social media icons below and connecting with us. Also, by listing Cure RTD as a charity you champion in an online application, you help raise awareness and gain new supporters. Thank you for your help!

FacebookInvite your friends to like Cure RTD’s official Facebook page

TwitterFollow Cure RTD on Twitter

InstagramFind us on Instagram

For individuals with RTD or parents of a child with RTD we host an active, private facebook message group with members from around the world that is by invite only.  Please email us at info@cureRTD.org for more information and access.

Media

Media outlets such as newspapers, magazines, television, and radio allow us to reach an even broader audience. If you have a personal or professional connection to such outlets, we welcome the opportunity to work with you in communicating information about RTD and Cure RTD to the general public.  It can also help to share your personal stories of living with RTD.

Email or Letter Writing Campaigns

Create a letter or email campaign to your friends and contacts.  A letter writing campaign gives you an opportunity to both raise awareness about RTD and also explain how people can help. The most successful campaigns start with letters to family, friends, colleagues, business associates, etc. Often, people want to help but they do not know how or are afraid to ask. Letter writing campaigns can bridge this gap.

Community Awareness

You can raise awareness about the nature of RTD and the work Cure RTD is doing to raise funds for research by speaking about it in your community (school, church, library, place of employment). Such speaking engagements can also create opportunities to grow the RTD community’s network of support. Much of Cure RTD’s success and speed of research is credited to collaboration and networking in the scientific and patient communities as well as with related disease groups.  If you’d like to speak with someone in the RTD office about how best to prepare for a speaking engagement, please Contact Us.

Fundraising Events

Fundraising for RTD research can be an empowering and rewarding experience. When you participate in a fundraising activity, you help Cure RTD grow its community and forge a stronger fundraising effort to battle RTD and raise awareness. If you’re interested in hosting your own fundraiser, Cure RTD has an experienced grassroots fundraising team to mentor you and help you through the process of running your own fundraiser.

For more information on see our Fundraising page

Other Resources for rare disease advocacy also include:

www.rarediseaseday.org

www.rareadvocates.org

www.curetheprocess.org

www.rarediseases.org

www.globalgenes.org