Programme

Click here to download a PDF version of the programme.

Wednesday presentations

Thursday presentations

Friday presentations

Saturday presentations

List of Poster Presentations

The Rare Diseases Conference is a global forum for all stakeholders within the Rare Diseases field to participate in open discussion, enhance models of best practice and share specialist knowledge regarding rare diseases and orphan drugs.

Incorporating the 11th annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX 2016 offered an extended programme to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare diseases community.

Call for Abstracts

RareX and ICORD welcomed submissions of abstracts representing all topics in the field of rare diseases and orphan products. The Call for Abstracts was open from 14 February until 19 June and is now closed.

Continued Professional Development (CPD) points

Important note: Attendees were required to sign the register daily at the Registration and Information desk to earn the CPD points and be issued with a certificate accordingly.

Earn 28 level 1 CPD points by attending the RareX 2016 Conference

Earn 4 level 2 Ethics points by attending the session: Ethics discussion taking place on Wednesday, 19 October at 15:30.

The purpose of CPD is to assist health professionals to maintain and acquire new and updated levels of knowledge, skills and ethical attitudes that will be of measurable benefit in professional practice and to enhance and promote professional integrity.

Click here to download the CPD Accreditation document received from the University of Cape Town.

Download a PDF version of the programme here.

Schedule at a glance

RareX 2016 | 19 -22 October 2016 | Cape Town, South Africa

SCHEDULE AT A GLANCE

Date

Venue

Time

WED, 19 OCTOBER

Foyer

07:30 – 17:00

Registration

RDSA

Foyer

08:30 – 17:00

Exhibition and Posters

Auditorium

08:30 – 09:00

Opening Session

Time

Auditorium

Simonsberg

Parallel one

09:00 – 10:00

Mitochondrial Disease

Genetic Landscape in South Africa

10:00 – 10:30

Refreshment break

Parallel two

10:30 – 12:30

Best practices in Transitional Medicine

What is rare in paediatric rheumatology?

Treating Pulmonary Hypertension in South Africa

Rare Tumours and Malignancies

Feeding Support – a multidisciplinary approach

Supportive Therapy – what is accesible in South Africa

12:30 – 13:30

Lunch

Parallel three

13:30 – 15:00

Inborn Errors of Metabolism

Palliative Care in South Africa

15:00 – 15:30

Refreshment break

Auditorium

15:30 – 17:30

Ethics discussion

Tasting Centre

17:30

Welcome Networking Reception

Date

Venue

Time

THU, 20 OCTOBER

Foyer

07:30 – 17:00

Registration

ICORD

Foyer

08:30 – 17:00

Exhibition and Posters

Auditorium

08:30 – 09:00

Opening Session

Auditorium

09:00 – 09:45

Session 1. Introductory presentations

A) Global overview of the Rare Disease field

B) African overview of the Rare Disease field

09:45 – 10:15

Refreshment break

Auditorium, 

Stellenberg and Simonsberg

10:15 – 12:15

Session 2. Open Discussion groups – break-out sessions

Group A: Diagnostics 

Group B: Congenital malformation 

Group C: Global Rare Disease Policies and Programmes 

Group D: Access to treatment 

Group E: Research 

Group F: Improved quality of life

Group G: Patient organisations

12:15 – 13:15

Lunch

Auditorium

13:15 – 15:00

Session 3. Obtaining a Diagnosis Through Available Diagnostic Procedures

Introduction: Report from Discussion Group A 

15:00 – 15:30

Refreshment break

Auditorium

15:30 – 17:00

Session 4. Congenital Malformations

Introduction: Report from Discussion Group B

17:15 – 19:15

Genetic Alliance South Africa Forum: Building unity in the human genetics community
(For more information: chair@geneticalliance.org.za) 

Auditorium

17:30 – 19:30

ICORD General Assembly –  ICORD members only

Date

Venue

Time

FRI, 21 OCTOBER

Foyer

07:30 – 17:00

Registration

ICORD

Foyer

08:30 – 18:00

Exhibition and Posters

Auditorium

08:30 – 10:30

Session 5. Global Rare Disease Policies and Programmes

Introduction: Report from Discussion Group C 

10:30 – 11:00

Refreshment break

Auditorium

11:00 – 12:45

Session 6. Access to treatment

Introduction: Report from Discussion Group D 

  

12:45 – 13:45

Lunch

Auditorium

13:45 – 15:45

Session 7. Research and research funding

Introduction: Report from Discussion Group E

Auditorium

15:45 – 16:45

Session 8. Panel discussion – “Problem Board” 

Panel to be confirmed

Foyer

16:45 – 18:00

Session 9. Poster Session with refreshments

19:00

Conference Dinner

Date

Venue

Time

SAT, 22 OCTOBER

Foyer

07:30 – 13:00

Registration

ICORD/RDI

Foyer

08:30 – 17:00

Exhibition and Posters

Auditorium

08:30 – 10:30

Session 10. Improved quality of life

Introduction: Report from Discussion Group F

10:30 – 11:00

Refreshment break

Auditorium

11:00 – 12:30

Session 11. Patient organisations

Introduction: Report from Discussion Group G

Auditorium

12:30 – 13:00

Conference closing

Sponsored by:

Sanofi Genzyme CSL Behring Equity Pharmaceuticals Marken PerkinElmer Pfizer sobi Audentes iConnect Novartis springernature Celgene Karolinska