Join the Jeans4Genes challenge

Slip into your skinny jeans and snap a pic with #KissMyRare to support the tenth year of Rare Disease Day on February 28 and help raise funds for people living with a rare disease.

According to the Rare Disease Society of South Africa, over 7000 different rare diseases have been identified to date, directly affecting the daily life of more than 350 million people worldwide.

One of these families are Jill and Jason Long in Ballito.

Jason goes to Bloom Special Needs School in Salt Rock and Jill has teamed up with the school to raise funds for this special day with the Jeans4Genes campaign.

“We are challenging other schools and the community to get on board with us in making this a special day to create awareness of Rare Diseases in the Ballito area.

“To be part of this day, kids and teachers need to buy a Rare Disease Ribbon at the cost of R10 and wear denim on the 28th,” said Long, who has dedicated her life to helping her 10-year-old boy who was born at 31 weeks, weighing only one kilogram and while suffering a rare disease has been tube fed for most of his life.

The objective of this day is for the last day of February to become officially recognised as Rare Disease Day by the World Health Organisation and to raise increasing awareness for rare diseases worldwide.

The hope is to speak in a united voice to encourage new treatments, care, resources and services that are needed in order to transform the individual experience of patients and relatives into collective actions, support, advocacy and community building.

While wearing your jeans and blue ribbon, remember to take part in the #KissMyRare campaign.

Patients often say that “rare diseases can kiss their butt”, so upload pics of your “rear” in your jeans to Facebook and Twitter using the hashtags #KissMyRare and #RareDiseasesSA.

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