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1ST - 3RD DEC 2021
HYBRID EVENT

ABOUT

Globally, persons living with a rare disease (PLWRD) and their families confront similar challenges. Chief among these is a lack of awareness of rare diseases, delayed diagnosis, and difficult access to the appropriate treatment and care. Health and social inequities differ in magnitude and impact between countries and regions. For the African region, challenges include limited diagnostic infrastructure and expert centers, a lack of public awareness, the absence of national and regional frameworks, as well as inadequate research, data, and investment. In addition, many families living with a rare disease face social exclusion, discrimination, and stigma which hinder their full participation in society.
 
Despite these challenges, there have been concerted actions to improve the wellbeing and quality of life of the rare disease community across the region: In Ghana, this effort is led by Rare Disease Ghana Initiative, the national non-profit organization leading advocacy and coordinating care for persons living with undiagnosed and rare diseases; and across Africa, patient groups are emerging and increasingly collaborating with other stakeholders to forge a more equitable environment for persons living with a rare disease.
 
The African Summit on Rare Diseases promotes learning and exchange on the state of rare diseases in Africa and serves as an occasion to strengthen and leverage opportunities for greater health and social equity.
 
The Summit will bring together key stakeholders to discuss challenges and innovations shaping the rare disease landscape in Africa from a national, regional, and global lens.

 
 

SPEAKERS

 

AGENDA

DAY 1

15:00

WELCOME &

ORIENTATION

DAY 2

09:00

OPENING

PLENARY

10:30

PLENARY 2 - LIFE WITH A RARE DISEASE IN GHANA

13:20

SESSION 3: INTRODUCTION TO PLENARY

16:00

SESSION 4: INTRODUCTION TO PLENARY

17:30

UNDIAGNOSED DISEASES NETWORK INTERNATIONAL

DAY 3

09:00

WORKSHOP SESSIONS

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We look forward to welcome you in Ghana

 

PARTNERS

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SPONSORS

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SUPPORTERS

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APPLY FOR BURSARY

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PAST EVENTS

 

FAQs

When and where will the African Summit on Rare Diseases Occur?


Starting from 1st to 3rd December in Accra, Ghana. It will Also be held virtually for those that can’t attend in person.




How can I participate in the summit?


To participate, you need to register and indicate your preferred mode of participation (in person or online). It is good to register early enough if you intend to attend in person since there are limited seats available. All other attendees will have to join virtually.




I am not in Accra, Can I still participate?


Yes, you can participate virtually or travel to Accra to attend. Please ensure that you have adhered to Government of Ghana policies on Covid-19 before traveling to attend the summit.




I cannot afford to travel to Accra to attend the summit


Rare Disease Ghana Initiative is offering travel and accommodation fellowships to persons living with rare diseases, families, caregivers, patient advocate groups and other selected participants that will like to attend in person. The fellowship will cover feeding, accommodation and transportation costs. Selected applicants will be contacted after filling the bursary application form.




Do I have to pay money to attend the summit?


No, attendance is free. However, you can support the organization by buying Summit souvenirs or participating in a fundraiser. This is optional.




How can my company sponsor this event?


Contact cooperate@rarediseaseghana.org and you will be assisted




I would like to take part in on-site and virtual exhibition at the summit


For exhibition, contact corporateaffairs@rarediseaseghana.org

There is a cost to this service





We are almost there

 

CONTACT US

For Sponsorship

contact
cooperate@rarediseaseghana.org

For More Info

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