Raremark Foundation
@WarriorsClub5
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A safe space platform creating awareness, educating, and breaking boundaries for #sicklecellwarriors and their loved ones.
Kampala, Uganda
Joined October 2019
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Our world has lost the fiercest warrior. You were such a light and cheer, a ray of hope to many. Because of you, many have embraced Sickle Cell disease and learned to live with it, many others learned a thing or two about it.
Your legacy will carry on. May you rest in eternal
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It is with heavy hearts that we share the news of the passing of our beloved Raremark Foundation member,
@the_plutonian
. Steven fought bravely against the complications of sickle cell, demonstrating the unwavering strength and resilience of a warrior.
Rest in peace, Steven. 🕊️
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Today we get to celebrate someone who went beyond her way to make sure the right story about warriors is being told. From 7pm at Protea Hotel, Kampala, you can join us for this special celebration.
For RSVP: +256 772 625343 or +256 752 995 738
Let's come together for
#ForJosey
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Join us in celebrating the legacy of Josephine Esisa, whose fervent commitment to creating positive change ignited the spark of the Raremark Foundation. We'll be hosting a memorial fundraiser in celebration of her life's efforts and to keep the fight going.
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Join us in honoring the life and legacy of our beloved Director. Here's the program for the burial ceremony. Your presence and thoughts are deeply appreciated.
As we prepare to bid our final farewell to
@Jo_siiey
, we would like to extend our heartfelt gratitude to each and every one of you for your unwavering support during this difficult time. Your thoughtful kindness and condolences have provided solace to our grieving hearts.
Your
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It's been a minute y'all. Hope you didn't miss us two much!!
#SickConversations
episode 3 will be dropping tomorrow. It would be reel-y cool if you checked it out 😉
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In celebration of her life which was a testament of strength, resilience, and unwavering determination, we are hosting a Gala Dinner
#ForJosey
on Friday, 29th September, at the beautiful Protea Hotel in Kampala. We would be honored to have you join us on this memorable evening.
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We are delighted to announce our partnership with
@BanzMedCare
. We'll be working with Banz Medcare to provide home care health services tailored to the needs of warriors.
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"Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.”
#ShiningStarGala
#ForJosey
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When Ashley found herself a victim of discrimination due to her condition, it was devastating but she feels stronger and powerful.
She shares her experience on
#WarriorStories
about how she managed to make peace with her condition and focus on the good.
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Join us in supporting
@ImaniMulungi
. We're asking for your help to cover the costs and support her through this challenging time. Any donation, big or small, will be greatly appreciated.
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We are teaming up with
@elpis4uganda
to explore the intersection of Sickle Cell Disease and Mental Health!
Living with Sickle Cell isn't just a physical battle; it can silently impact mental well-being.
Let's shed light on this critical aspect of the Sickle Cell journey.
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''I would like to change perspective and improve opinions of people in regards to Sickle Cell disease.''
Here is a one on one with
@Jo_siiey
in this episode of
#warriorstories
Full video:
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We are excited to welcome
@jillfidelia
to our team.
Jill is passionate about creating awareness for
#SickleCell
disease and getting more people, especially youths to know their genotype, and shaping the conversations around it.
#iMarch4SCD
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Caregiving is a significant public health issue affecting millions of individuals' quality of life. Caregivers play a crucial role in a person’s social or health needs.
In this upcoming episode of
#SickConversations
, we explore what it's like to be a warrior's friend.
#WTS
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Thank you
@Simply_Sayo
for your generous donation. Words cannot express how grateful we are. You deserve all the flowers.
Please tag sickle cell charities and organisations from all over the world- especially in Africa ❤️
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What was the weirdest reaction you got when someone discovered you had Sickle cell?
The
#SickConversations
is finally here.
@Jo_siiey
and
@don_magezi
join us in this first episode to talk about anything and everything
#SCD
Watch the full video here:
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Hey all, it's been a minute! Hope you're ready for another episode of
#SickConversations
Join us in a heartfelt conversation with
@don_magezi
, who courageously shares his hospitalization experience. In this segment, he opens up about the challenges, fears, and profound insights
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It's a new week and we want to send our birthday shout outs 📣 to one of our very own,
@don_magezi
We wish you a splendid one on this new chapter 🎉
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Today, we celebrate
@Jo_siiey
's life and her incredible contribution towards the fight against sickle cell disease. Her passion and dedication have been instrumental in raising awareness and advocating for better treatment for warriors.
Wishing you a wonderful birthday filled
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About tomorrow's X space!
Have you wondered what kind of routines warriors follow in order to maintain a level of normalcy in their lives? We have invited Dr. Lisa, Paul, and Angela to share their experiences and tell us some of the common routines they have heard of or follow.
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The fight against
#SickleCell
disease remains ignored and underfunded. With many people unaware of its complications, there's a need for awareness, testing, and provision of mental and physical healthcare.
Together we can improve
#SCD
management in Uganda. Join us in the
#30in30
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Tomorrow is a great day for us and
#warriors
.
@Jo_siiey
and
@don_magezi
will be part of a panel discussion talking about 'Improving the livelihoods of sickle cell warriors in Uganda.'
Let's get the conversation started!
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Today we are throwing back to our
#warriorstory
episodes.
We kick it off with a one on one session featuring
@Jo_siiey
Full clip:
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In many parts of the country,
#SCD
remains silent and burdensome to several people. Investing in research is crucial for improving the lives of those living with sickle cell and ultimately finding a cure. It is time to increase funding for research on this silent disease.
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We are thrilled to announce our first ever
@Twitterspaces
sickle cell chat.
@Jo_siiey
@Memej99
and
@DonniMagz
are going to be joining us in an all-around conversation about SCD and wellness.
make a date with us, Wednesday, 3pm.
PS: we have an announcement too!
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Sickle cell fatigue happens when limited oxygen reaches muscles and other tissues.
The pain that comes as a result of sickle cell disease can also make it hard to sleep resulting into sleep deprivation.
#Warrior
#SickleCellAwarenessMonth
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Warriors, we hear you! 🔥🙌
We know that you have questions about
#SickleCell
disease, and we're here to answer them. Stay tuned for our upcoming video where we'll be addressing some of the most burning questions about sickle cell disease.
#SickleCellAwareness
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The
#30in30
campaign continues! Thank you to everyone who has supported us so far. This is our ambitious goal but we can not do it alone, we need your support to make a difference in the lives of warriors.
@don_magezi
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If today seems different it's because a fierce warrior was born and we want to celebrate her. Our very own
@Jo_siiey
Happy birthday 🎂 and wishing you many more cheerful years 🥳
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Our
#WCW
is the inspiring Dr.
@lisa_treats256
, a warrior, doing her medical degree and running her cake business. She's breaking stereotypes around
#sicklecell
by pushing the boundaries on what a warrior can achieve. Her call out; never let anyone state what you can & can't do.
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It's Day 5 of our
#30in30
campaign.
Live today on the
@Big_Convos
is
@Jo_siiey
who will be sharing more details about the campaign.
You can stream the conversation live on
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What does it feel like dating/being in a relationship with a warrior? Curious to find out?
We hosted
@don_magezi
and
@NicoleMagabo
on this episode of
#SickConversations
and they might just have the answers you are looking for! Stay tuned for the full video.
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On this
#WorldLiverDay
, remember to take care of your liver health and help it detoxify you and not the other way around.
#LiverDay
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Warriors in Uganda and around the globe are front and center to everything we do.
Hear from
@BMadewo
about how our community strives to make a positive difference for all SCD warriors.
Connect with us on +256 784 72808 or email: sicklecellwarriorsclub
@gmail
.com
#iMarch4SCD
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Every contribution gets Elijah closer to getting the bone marrow transplant he needs.
We are almost there.
#SaveElijah
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Meet Sheila, a warrior, and finalist in clinical medicine. Being a warrior motivates her to learn more about health to make a difference in people's lives. Her go-to quote: "love the life you live, and live the life you love." Let her inspire you to never give up on your dreams!
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Starting this Saturday, 28th May, we'll be conducting our warrior peer support sessions from 12 midday at the Innovation village block B, with our partner,
@mindful_uganda
Come one, come all.
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It's important to remember that behind the statistics and medical jargon are real people with real stories. By sharing the stories of warriors we want to ensure that their diverse experiences and perspectives are reflected in the media, in research, and in policy-making.
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The process of learning and coping with your Sickle cell illness is a lifetime journey and components of your health will be more understood over time, especially how you manage the mental strain it comes with. Hear some perspectives from this X-Space later today.
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"They won't let me even try, at least let me try."
Nova’s story is part of the
#WarriorStories
series which offers a glimpse into lives of those living with SCD and how they tackle the challenges along the way.
Full video:
#VoicesInAction
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As a warrior, if the only thing you accomplished in 2022 is that you survived, please know that we’re very proud of you.
We’re sure you’re underselling yourself a bit, but sometimes just existing feels like a monumental task and you deserve to know that you did a great job.💖
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Happy Monday!
This is a reminder that you shouldn't feel bad about setting priorities that bring out the best in you. Have a great week.
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Typically, you won’t know why you had a crisis, and there may be more than one cause. Below we share some of the possible triggers. if you know any other triggers, share in the comments.
#SickleCell
#Warriors
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''I first discovered I had sickle cell disease when I was 7 years old.''
Steven shares his experience as a
#warrior
in this episode of
#warriorstories
.
Full story:
#SickleCellAwarenessMonth
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You should know how to take care of yourself in the case of a sickle cell complication, and having the correct information can help you make the right decisions or take the right course of action.
In this segment of
#SickConversations
,
@Jo_siiey
, and
@don_magezi
answer some of
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This
#IndependenceDay
, let's celebrate all that we are and what we stand for. Let's celebrate all the diverse experiences many will never understand. Let's celebrate the freedom to be YOU. Happy Independence Day Warriors
#UgandaAt61
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With the heat lately,your best friend should be a water bottle. As a
#sickler
you are prone to dehydration that could trigger a sudden crisis.
#Sicklecell
#livingwithsicklecell
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We want to extend a heartfelt thank you to everyone who attended the
#ForJosey
Shining Star Gala and to all those who have been a part of Josephine's journey. Your presence and support are invaluable.
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We have teamed up with
@RocketHealthUG
@kacita_uganda
,
@MakingMoreH
, and more in a free Health camp that will be taking place tomorrow at Nakasero market from 8 am. Do stop by and let's talk about
#SickleCell
disease and the
#30in30
campaign.
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If you're living with a chronic illness and have been disbelieved, dismissed, or discredited, we just want to say you're an awesome person and doing great. Don't let your shine down.
#Warrior
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Living with sickle cell disease can be a daily struggle, but it doesn't have to be a journey taken alone. From sharing information and resources to providing emotional support, we can all play a part in improving the lives of those affected by sickle cell disease.
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Lights....camera....action!!!
Something in the offing!!!
Stay tuned 😉
#behindthescenes
#SickConversations
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As the world marks
#WorldPopulationDay
, it's worth noting that the greatest burden of Sickle cell disease is in sub-Saharan Africa, where access to medical care and public health strategies to decrease mortality and morbidity are not uniformly available.
#WorldPopulationDay2022
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Our hope on this
#WorldSickleCellDay
is that through this, we can help to dispel myths and tell people in our communities that
#SCD
is manageable and that everyone can help fight the stigma.
#DoIt4Them
#S4SickleCellLive
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In a year that taught us so much. We learned that together we can overcome anything. Here's to a cheerful 2023!
#HappyNewYear
#SickConversations
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As we continue to
#Shinethelight
on Sickle cell disease, we hope we dispel myths and tell people in our communities that SCD is manageable and we can all break the stigma.
#WorldSickleCellDay
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Let's honor Josephine's memory by standing together, listening, supporting, and understanding the warriors who battle sickle cell every day:
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Proud to have
@Jo_siiey
and
@don_magezi
talk about
#SickleCell
disease this morning on
@882SanyuFM
breakfast show. Do tune in.
#SickleCellAwarenessMonth
#30in30
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2022....the year worth being the better version of yourself. Cheers to a new year.
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One of the key learnings from this event was the importance of listening to warriors when they express themselves. Josephine's advocacy for sickle cell warriors emphasized the significance of hearing their voices and understanding their unique challenges.
#ShiningStarGala
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Sickle cell disease may shape our bodies, but it doesn't define us. Today and every day, let's celebrate the strength and resilience of warriors and send love and hope. Happy Valentine's Day
#ValentinesDay
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Today, we celebrate
#WorldSickleCellDay
, uniting communities worldwide to raise awareness about sickle cell disease.
Did you know that early detection is key in managing sickle cell disease? On this World Sickle Cell Day, let's emphasize the importance of formalizing newborn
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Video alert!! 👀
As promised, you can now check out the full episode on
While there, don't forget to subscribe and turn on notifications for upcoming sessions. Happy weekend.
It's been a minute y'all. Hope you didn't miss us two much!!
#SickConversations
episode 3 will be dropping tomorrow. It would be reel-y cool if you checked it out 😉
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Meet our
#WCW
, Sinead!
We can’t think of any better representation of beauty than a warrior who is unafraid to be herself. For fun, she loves to lose herself in travel.
Her positive mantra: listen to music to get in the right state of mind and mood.
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Over time, sickle cell disease can lead to severe complications. It can harm a warrior’s spleen, brain, eyes, lungs, liver, heart, kidneys, joints, and bones.
We have an opportunity to make strides in treatments for sickle cell warriors in our communities through the
#30in30
.
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They are a 10, but they don't want to know their genotype
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#SickleCell
Disease does not discriminate based on ethnicity or skin colour. It occurs more often among people from regions of the world where malaria is common. Millions of people from around the world are affected by this disease.
#SickleCell
#Warrior
#Mythbusters
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#HappeningNow
: Are you around Nakasero Market or the surrounding areas? Do stop by our tent at the
@RocketHealthUG
Health camp for a free consultation on
#SickleCell
disease and testing for other health conditions.
#SickleCellAwarenessMonth
#30in30
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For long,
#warriors
have been linked to a shorter life span and continue to face it today. But the prognosis for people with Sickle Cell disease has become more positive over time, especially within the last 20 years.
#VoicesInAction
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Roses are red
violets are blue
#SickConversations
is back!!
Check out what
@Jo_siiey
and
@don_magezi
were talking about in this episode👉
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Winnie maintains minimal stress levels as a way of managing
#SCD
and has gone on to live a fulfilled life. So how does she do it?
See her story on this episode of
#warriorstories
where she shares her experience.
@Nabulyawinnie1
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Hey Warriors, embrace each new day as an opportunity to shine, learn, and grow. Remember, you are not defined by your illness; you are defined by your resilience. 💪
We wish you a great week ahead.
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Explore using
#Telemedicine
platforms to avoid going to the hospital during the
#GlobalPandemic
and help you manage a
#SickleCell
crisis from home. The convenience of having your pain meds delivered to your doorstep saves you lots of trouble.
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Hello
#Warriors
? New video alert!!
Dr. Ruth Senyonyi, a Counselling Psychologist, shares with
@WarriorsClub5
about
#SickleCell
disease and how to manage the mental strain that comes with it.
Subscribe and watch the full clip on YouTube at
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To love is to find someone or people that match our level of self-care, energy, ambition, and welfare. It's a constant search for someone who makes you feel WHOLE!!
We hope you have that kind of person. Happy
#ValentinesDay
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If your loved one has
#SickleCellDisease
and you want to help them enjoy a normal life. Here are some tips you can use to provide support.
#Warrior
#SickleCellAwarenessMonth
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I hope we can continue to work towards a world where gender is re-imagined as a spectrum, rather than a binary. Happy
#WomensDay
#InternationalWomensDay
#iMarch4SCD
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Mothers are the greatest warriors of all. Their tenacity and love is unmatched.
Happy
#MothersDay
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What happened in 2022?
In 2022, more people became aware of Sickle cell disease and why it's essential for more warriors to speak up and share their experiences. At
#SickConversations
, we recap how the year unfolded. Watch more here:
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Yes, 80% and could be more.
#SickleCell
disease continues to be one of the prevalent chronic illnesses across Africa and many children die from preventable causes.
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"I have learned to pace myself because this journey is one for a lifetime."
#SickConversations
has a sit down with
@rayzak
as he gives an insight on how he has navigated life for over three decades, living with Sickle cell disease.
📹 Full clip:
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There's so much you can do to break such bias and support
#warriors
Know that they need your support.
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Happy New month!!
If you’re thinking about quitting your job to make a meaningful career transition, first think about the why, the what, and the when. As our guest on
#SickConversations
,
@joy_aliba
explains.
Full video now out on YouTube:
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As more people learn about Sickle cell disease, caregiving is being provided by people who aren't healthcare professionals, and it comes with its strain.
As a caregiver, taking care of yourself is always essential.
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We couldn't agree more 🤝🏾
#S4SickleCellLive
Sickle Cell Disease is constantly frowned upon or neglected by the healthcare systems. Its about time they have a platform speaking for them
#S4SickleCellLive
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What’s ‘sickle cell disease’ called in your language?
Share in the comments below.
#Warrior
#SickleCell
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The bearing of that statement could be felt in the evening of Friday 29 September as family, friends, colleagues, acquaintances, warriors, and well-wishers turned up for the
#ShiningStarGala
in memory of Josephine Madewo Esisa.
#ForJosey
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Confused? Here's why!
A person with the sickle cell trait has inherited only a copy of the sickle cell gene from a parent whereas a person with
#SCD
has two copies of the gene, one from each parent.
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When you're talking to someone about sickle cell, it can be tempting to find a quick fix.
For this
#holidayseason
, try to listen carefully to how someone is feeling and be thoughtful when asking questions or sharing advice.
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For motivation, here's a reminder as you start off the week.
We wish you a good one. Have an amazing week ahead.
#HappyHolidays
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Happy week
#Warriors
.
Here's a reminder to always spread positive vibes and inspiration through your story. Don't let it hold you back. Have a great week ahead 🤗
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