Rare lives that can otherwise be perceived as melancholic, becomes colored and empowered by the care of others as illustrated below by a couple of spectacular images captured from various events worldwide. Upon seeing these updates, we shook with joyful emotions and astonishment that global efforts for recognition of rare diseases went this far 😍😍😍 … Continue reading 219 ~ Reframe rare – 7/7 ~

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no or limited treatment options for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare … Continue reading 218 ~ Reframe rare – 6/7 ~

29/02/2020 Worldwide events took place to celebrate the strength, highlight the challenges, and raise funds to improve the lives of 300 million individuals who live with upto 6000+ identified rare diseases. Dys is our reality: Having highlighted the above facts, its never too late to contemplate and celebrate all the hurdles and grueling circumstances you've … Continue reading 217 ~ Reframe rare – 5/7 ~

Rare Disease awareness month and day has concluded. Unfortunately this chapter could not be completed on time, but im publishing it anyway with an appeal to educators in all various learning institutions to kindly mark the 28th of February on their calenders and dedicate it towards support of the rare disease community. Kelly brainstormed an … Continue reading 216 ~ Reframe Rare – 4/7 ~

What are some of the major problems experienced by people who have rare diseases & why is awareness so important? ⚠️ Difficulty in obtaining an accurate diagnosis ⚠️ Limited treatment options ⚠️ Little or no research being done on the disease ⚠️ Difficulty finding physicians or treatment centers with experience in treating a particular rare … Continue reading 215 ~ Reframe rare – 3/7 ~

Instead of writing an entirely new chapter, i decided to share with you a brilliant article written by Megan Toni Hunter. This article encapsulates all that needs to be reiterated and emphasized upon in terms of joining the Rare Disease Day movement. Megan has layed out the facts loud and clear 👏 Rare Disease Day … Continue reading 214 ~ Reframe rare – 2/7 ~

Rare Disease Day is 4 days away! With 2020, being a leap year, we are wanting to make our #RareDiseaseDay celebrations extra special, and we need your support to do it! There are over 7,000 rare diseases affecting over 350 million people worldwide. Medical expertise and knowledge on rare diseases is scarce and scattered across … Continue reading 213 ~ Reframe rare – 1/7 ~