215 ~ Reframe rare – 3/7 ~

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 disease

⚠️ Treatments that are generally more expensive than those for common diseases

⚠️ Reimbursement issues related to private insurance, Medicare, and Medicaid

⚠️ Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease

⚠️ Feelings of isolation and of having been abandoned or “orphaned” by our healthcare system.

Here is a brief overview of the work being carried out by RDSA and the reason why we need the publics assistance to #ReframeRare?

Every month we support:

🔹1600+ patients
🔹700+ caregivers
🔹85+ online community platforms
🔹80+ Rare Voices ambassadors
🔹1400+ healthcare professionals
🔹680 different disease groups

By purchasing a ribbon, joining in the denim walk fundraiser, or however its possible for you to participate; this is an excellent opportunity to assist Rare Diseases South Africa in continuing to work together to improve the lives of all South African’s impacted by Rare Diseases.

We also have gorgeous Lapel awareness pins designed for daily wear – not exclusive to ambassadors and available at only R100 each.

Anyone can wear it to show their #care4rare, spark a conversation, and thus 𝗰𝗿𝗲𝗮𝘁𝗲 𝘆𝗲𝗮𝗿 𝗿𝗼𝘂𝗻𝗱 𝗮𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗮𝗻𝗱 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 𝗳𝗼𝗿 𝘁𝗵𝗼𝘀𝗲 𝗮𝗳𝗳𝗲𝗰𝘁𝗲𝗱. It 𝗰𝗮𝗻 be 𝗮𝘁𝘁𝗮𝗰𝗵ed 𝘁𝗼 a 𝗷𝗮𝗰𝗸𝗲𝘁, 𝗯𝗹𝗮𝘇𝗲𝗿 𝗼𝗿 𝘀𝗰𝗵𝗼𝗼𝗹 𝗯𝗮𝗴.

How lovely to note that by coincidence it also represents turquoise for Dysautonomia advocacy and support 💙

Those of us who are blessed with more will begin to understand

All of us who’ve been hospitalized in the state sector very well know

The grueling circumstances people with rare diseases undergo

So despite each ones personal struggles, we strive to journey alongside the destitute

An aching appeal for communities to join in the widespread endeavors and contribute

If the capable among us do not take up a strong initiative

If we as a community are disconnected and uncooperative

Who will give our abandoned fellow humans a voice?

Who will engage for a change as cause for them to rejoice?

Just because some of us have the luxury of affording private care

Lets not disregard the larger majority who require social welfare

Alas! If only we could paint a comprehensive picture for you to see

Then perhaps people’s hearts will unlock and feel the urgency in our plea